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'Let's talk about': palliative care survey report
All Ireland Institute of Hospice and Palliative Care
During the two phases of data collection during 2014 and 2015, a total of 528 people completed the Let’s Talk About survey. Of these, 419 surveys came from the Republic of Ireland, and 109 surveys came from Northern Ireland. Surveys were completed from all 26 counties in the Republic of Ireland and six counties in Northern Ireland. Respondents were asked to identify the primary long-term condition(s) of the individuals who had the experience of palliative care. Cancer was the most frequently experienced condition equating to almost half of all conditions identified. Neurological disorders including Dementia and Parkinson’s disease were the next biggest grouping. Taken collectively, it has been possible to identify two discreet groupings, people who had cancer and people who did not, which provided the opportunity for further analysis (See Section 4). The main analysis of the survey is detailed in Section 3 of the report, presenting the results from the eight triangle questions showing how the 528 respondents signified their experiences. Further detail of the survey tool used is included in Section 1 of the report. In Section 3, results are provided for each of the eight questions followed by a broad interpretation highlighting key themes. Stories submitted by the respondents are included by way of illustration, relating to each of the eight questions for which a summary statistical overview is provided on page 6. Readers are encouraged to take time to read the extracts from the moving personal narratives contained in Section 3 and Section 5 of this report. Further research into the complexity of the information available will be required to maximize this resource. In particular it would be useful to explore the marked contrast of those in the noncancer group being more likely to experience feelings of frustration compared to the experience of the cancer group (See Section 4). Section 5 sets out a thematic analysis of the stories contributed through the survey. This analysis resulted in three broad thematic categories (each with a number of sub-themes): The differences good care makes; Poor experience of care; and Poor communication. Exemplar stories allow readers to understand the theme/sub-theme from the perspective of the people who went through the experience. The most common theme emerging from the stories is the difference good care makes to people’s lives, care ranging from specialised medical interventions to everyday personal care. From the stories, it is very clear that people’s understanding of care is not just about caring for an illness and its physical symptoms. Good care puts the person at the centre of care and takes into account how the person’s illness or condition affects them physically, socially and psychologically. Respondents to the Let’s Talk About survey recount both good and bad experiences of palliative care from health and social care services. User experience must continue to be the benchmark against which policy makers and commissioners approach the future of palliative care services and policy development across the Republic of Ireland and Northern Ireland. The stories and sharing of personal experience provide a unique insight into the experience of living and dying with a life-limiting condition; the richness of the responses informed the formulation and initial exploration of the following key themes: • People need help to plan for the future • People experience too little autonomy • People feel helpless and frustrated • People value clear and sensitive communication • People value timely and appropriate information • There are emotional and psychological needs that are not met • People would like their family and friends more involved
Publication Date:
Type: Report
Peer-Reviewed: Unknown
Language(s): English
Institution: Lenus
Publisher(s): All Ireland Institute of Hospice and Palliative Care
Related Link(s):
First Indexed: 2016-06-11 07:12:40 Last Updated: 2017-05-12 06:30:15