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’.

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Despite the federal government’s $1.5 billion investment between 1993 and 2010 to fund 164 separate community-based systems of care, there has been an extremely limited attempt to measure the impact of system of care. The impetus for this research is the struggle for how the value based concept of system of care is communicated within a community. While child mental health services researchers have published a number of randomized control trials to explore individual level supports for youth served in a system of care community, researchers have struggled to devise a way to measure system of care philosophy diffusion. While system of care is a system level intervention, this study explored the role of the system of care value: family voice as it pertains to direct practice for children and families. The goal was to assess whether specific direct practices regularly associated with system of care (i.e., wraparound or home-based services) lead to greater family voice or if the mere presence of a high-functioning system of care community leads to equal family voice for all receiving community-based services. The primary finding was a relationship between the perception of family functioning and perceived empowerment/self-efficacy. This finding suggests that as functioning improves, so does a caregiver’s perception of their personal empowerment/ self-efficacy. While the framing of this study was to “unpack” the system of care value of family voice, the findings do not support any clear cut explanation for how family voice is promoted or communicated to families. Based on the findings, it appears as if families feel more empowered as their child improves. Additional research needs to be done on the application of family voice within the practice setting to better understand how to best instruct staff to infuse family voice in their daily practice.