The project ran from March to September 2010. During this time views about end of life care were sought from the following four groups of people:
- People who were dying, or had life limiting illnesses
- Carers of people who were dying
- People who had been bereaved
- People who had opinions and experience of end of life care through relatives/friends or as staff working with people at the end of their lives.
The project aimed to collect stories from 70 people from across north east London: the boroughs of City and Hackney, Tower Hamlets, Newham, Redbridge, Barking and Dagenham, Waltham Forest and Havering.
Most deaths of people using end of life care services follow a period of chronic illness such as heart disease, cancer, stroke, chronic respiratory disease, neurological disease or dementia and the project tried to make sure that experiences associated with a range of illnesses were included.
The steering group was keen to ensure that the diverse communities of the area were represented in the views collected. The group felt it was important to understand the make-up of the local population so that the people who engaged with the project were representative of that population. An independent organisation was asked to advise on this issue and they produced a sampling framework which provided a series of targets in terms of age, gender, ethnicity, cause of end of life care need, distribution of death and borough as well as the four cohorts of:
- People who are dying/have life limiting illness and living with end of life care needs.
- Carers of people who are dying
- People who have been bereaved
- Members of the public who have opinions and experience of end of life care (people working in end of life care were included in this cohort).
This framework was used during the project to compare the actual respondents with the targets
Seventy-five questionnaires were collected through the various activities throughout the project. Overall the completed questionnaires represented a good range of views, with slightly fewer young people, men, Asian people, Muslim people and patients than the sampling framework required to get a sample entirely representative of the local community. Given the nature of the project the response was felt to be satisfactory and the reach into different communities of the project quite good.
The analysis relates only to the 75 questionnaires collected as part of this project. Other data collected includes 13 creative writing pieces, graffiti wall information, a DVD and five in-depth stories. These data did not have demographic details attached.
- Age and Gender The respondents represented a good range of age groups. The largest group were 50-59 years. The remainder were spread fairly evenly across the ages from 20-89 years with the exception of the 20-29 years group who were under-represented (only one person was in this group). More women than men completed the questionnaire, 37 women (63%) compared to 28 men (37%).
- Ethnicity Respondents came from a broad range of ethnic backgrounds. Attendance at participation events was broader than that captured through the questionnaire analysis. For instance, a large group of Turkish people and their children attended the St Joseph’s event on 9 August and Asian groups attended the events on 27 May and the Tea Dance on 6 August. These groups tended not to complete questionnaires but several took part in the filming and the Colours of Life workshop at the St Joseph’s event. The largest group of people completing the questionnaire was White, the second largest Black and the third Asian. Compared to the sampling framework this gave an under-representation of Asian and mixed ethnic backgrounds.
- Religion People completing the questionnaires came from a wide range of faiths. The largest group were Christian, the second largest of no faith, followed by Jewish, Muslim, Hindu, Sikh, Jain and Pagan. The Muslim group was under-represented by those filling in the questionnaire compared with the sampling framework but as noted above there were a number of Turkish and Pakistani attendees at the events, who participated in other ways than completing the questionnaires. It is possible that this group included a number of Muslim people. The main events were planned to avoid the period of Ramadan, however they did take place close to the beginning of the Ramadan, which might have prevented some Muslim people attending.
- Borough All boroughs across north east London are represented with fewer respondents from the outer London boroughs, particularly Havering and to a lesser extent Waltham Forest. This may in part have been due to the location of the venues for the larger events.
- Employment status The sampling framework did not include employment status, this factor was added later. Not surprisingly, given the age and health profile the largest groups of respondents were retired. The next largest group were those employed. This was due to the numbers of those employed in health and social care who attended the events.
- Cohorts Respondents were asked to classify themselves by one of five cohorts: patient, carer, bereaved, member of the public or working in health/social care. All cohorts were represented, with fewer patients than the sampling framework suggested. Discussions took place with the hospices about interviewing patients but this was thought not to be possible as ethics committee approval would have been necessary. A decision was made by the sub-group to hold open events and hope that some patients would be engaged. Ten questionnaires were filled in by patients, which is a reasonable result.
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