This research explores the question of what role medical family therapists play on a health care team when working with serious pediatric illness. Seven participants from three different health care settings were interviewed. Results were organized within the ecological systems framework (Bronfenbrenner, 1979) according to the various ways participants became a part of the family's illness experience. Participants identified roles directly with the family, with the health care team, and within the larger health care system. Clinical implications are identified concerning the preparation of the health care system for the continued growth and evolution of the field of medical family therapy. / Master of Science

As the population ages and individuals with serious illnesses continue to live longer, they are experiencing disruptions in habits and routines, roles, and rituals that provide meaning to their lives. Many individuals receiving palliative or hospice care and their family members are unable to maintain their quality of life (QOL) and well-being due to the negative impact of the serious illness. Individuals and their family caregivers experience difficulty in participating and engaging in activities of daily living (ADLs) (i.e., dressing, bathing, eating) and instrumental activities of daily living (IADLs) (i.e., making meals, working, finances). Individuals are unable to maintain their independence, return home due to environmental barriers, and receive support from family members due to a lack of training. Family caregivers are thrust into the role of caring for their loved ones without training. Currently, there is an increased need for more health professionals to work in palliative and hospice care. Occupational therapy is one profession that can fill this gap; however, there is a lack of education for occupational therapy practitioners (OTPs) at both the entry and post-professional levels. Occupational Therapy in Palliative and Hospice Care: A Certificate Program contains key components of related professional certification programs in palliative care. Program content aligns with palliative care principles and specific evidence-based occupational knowledge so OTPs will become integral interprofessional palliative care team members. It aims to demonstrate occupational therapy's value in this setting and prepare OTPs to work successfully. Modules provide the foundational information needed to facilitate the use of the principles of palliative care, understand the clients, collaborate with members of the interprofessional team, and provide meaningful occupational interventions during this transition. This program addresses the gap and need for occupational engagement, health promotion, and occupational justice for these individuals and their family members at the end-of-life (EOL).

Yes / The Self-Regulation Model (SRM) identifies that the beliefs people hold about an illness can influence their responses to that illness. Although there are generic measures of illness representations, there is a need for a brief tailored measure to use with people with dementia. The aim of this study was to develop and validate a brief measure called the Representations and Adjustment to Dementia Index (RADIX). The RADIX contains questions on the SRM elements: Identity, Cause, Timeline, Control, and Consequences. The RADIX validation was conducted with a sample of 385 community-dwelling people with mild to moderate dementia who were taking part in the IDEAL cohort study. Test-retest reliability was conducted over a 4-week period with a separate sample of 20 people with dementia. The validation process resulted in a reduction in the number of items in the Timeline, Control, and Consequences items. The resulting RADIX demonstrated good acceptability, internal reliability, and test-retest reliability. All the RADIX items had low missing data, indicating good acceptability. The factor analysis confirmed that the Consequences items formed two subscales (practical and emotional consequences) that had Cronbach's α of 8 and 0.91 respectively. Test-retest reliability indicated that the Identity, Timeline, and Control items had moderate reliability and the practical and emotional consequences scales had good reliability. The RADIX demonstrates acceptable psychometric properties, proves to be a useful measure for exploring people's beliefs about dementia, and could aid the provision of tailored information and support to people with dementia.

Survivors of critical illness suffer from a range of problems affecting physical, psychological and social well-being (Needham et al 2011). Weakness, fatigue and malnutrition are highly prevalent during the months following a critical illness. Few studies have systematically and comprehensively explored the factors that influence nutritional recovery or ways to overcome them. The aim of this study was to provide a comprehensive understanding of the factors influencing nutritional recovery, and the relationship between them, in post intensive care (ICU) patients. A model of care was then developed to improve current management of nutrition for patients recovering from critical illness. Grounded theory methodology was used with a mixed method research design. Nutritional status and intake were assessed on discharge from ICU and at three months post ICU discharge. The process of nutritional recovery during the first three months post ICU discharge was explored from a patient perspective and at the level of ward organisation of care, through observation of practice and interviewing patients and staff. Seventeen patients, who had required greater than 48 hours ventilation, were recruited on discharge from the ICU. On transfer to the ward 9 of the 17 patients were assessed as well-nourished and 8 were malnourished using Subjective Global Assessment. At three months post ICU discharge 14 patients were followed up (1 lost to follow up, 1 incapacitated following illness and 1 went overseas). Seven of these were classified as well-nourished and the other 7 were malnourished. Patients universally failed to meet their nutritional targets during their ward stay and although intakes had improved by three months post ICU discharge, the majority of patients were still not achieving their nutritional requirements. Qualitative data revealed that patients' nutritional intake was influenced by interrelated system breakdowns during the recovery process; this emerged as the overarching core theme. Three sub-themes were ‘experiencing a dysfunctional body’, ‘experiencing socio-cultural changes in relation to eating and ‘encountering organisational nutritional care delivery failures’. This study identified connections and interrelations between these concepts and provided new insights into the factors that influence the nutritional care of post ICU patients. In order to optimise nutritional rehabilitation in this patient group a model of care has been developed which addresses the identified organisational and patient related factors that were shown to influence the nutritional recovery of patients after critical illness. This nutritional strategy will need to be evaluated in clinical trials or quality improvement programmes.

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