Youth with intellectual disabilities and the right to make choices : investigating the family context to inform a training program

People with intellectual disabilities (ID) are more likely to be victims of abuse and human rights violations than people without ID. The 3Rs: Rights, Respect, and Responsibility project has developed and is testing a human rights training program for adults with ID. The current project was conducted to make recommendations to adapt the 3Rs rights training program to be used with youth with ID and their families. An interpretive phenomenological framework was employed to investigate youth with ID, parents', and siblings' perceptions of the i r experiences with choice making, an enactment of rights, in the family context. Thematic analysis of interviews revealed that, consistent with previous research, family members consider family values, conventions, and family members' well being when making decisions. A training program should promote a consideration of expanded opportunities for youth with ID to make choices and should be flexible to address individual families' cultures, needs, and desires.

The Relationship between Dementia Family Caregivers' Traditional Values and Beliefs about Caregiving and Well-being

Introduction: Canada’s aging population is diverse and this diversity will continue to grow for the next two decades (Government of Canada, 2002; Katz, 2005; Statistics Canada, 2010). Objective: to examine the relationship between dementia family caregivers’ traditionally-based beliefs about caregiving, their caregiving experience, and their well-being. Method: exploratory secondary data analysis of cross-sectional survey data from 76 community caregivers of persons with dementia in Ontario. Results: traditional values for caregiving was independently associated with coping resources and health status but not depression symptoms. Caregiver self-efficacy and social support both partially mediated the relationship between beliefs about caregiving and caregiver health status. Discussion: Findings from this exploratory study are consistent with stress process models of culture and caregiving. The finding that self-efficacy was associated with traditional values and that it mediated the relationship between traditional values and caregiver well-being is new to the literature.

Examining the Influence of the Patient Declaration of Values on Hospital Policies and Practices

The purpose of this study was to explore how a leading Ontario hospital operationalizes their Patient Declaration of Values (PDoV) in policy and in practice. This was a single case study, which took place in a leading patient-centred Ontario hospital. The study included 18 individual interviews with employees and patient experience advisors, as well as, document analysis of strategic planning reports (n=10). Five themes emerged: (1) setting the stage, (2) inspiring change, (3) organizational structures, (4) organizational and environmental barriers, and (5) reflection and improvement. This study has highlighted the role of the PDoV within a leading Ontario hospital. It lends itself to providing a process with core strategies for creating change in an acute health care organization; to embed a culture of patient and family centred care.