Background
Methods
Inclusion criteria
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Not considering the issue worth considering at the moment
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Lack of knowledge of the options available
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Fear or distress associated with thinking about death or dying
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Difficulty persuading significant others to participate in these conversations, or fear of upsetting others
Search criteria and methods
Selection of included studies
Data extraction and analysis
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Primary outcomes, relating to evidence of encouraging discussions between participating targets and people close to them, or;
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Secondary outcomes relating either to addressing known barriers to discussion or to intermediate outcomes such as attendance at an event, evidence of engagement in a process, or participants’ ratings of the intervention.
Results
Search results
Characteristics of included studies
Study ID and location | Aim of intervention | Intervention methods | Reason for inclusion | Evaluation methods | Main findings |
---|---|---|---|---|---|
To raise awareness among the general public of the possibility of receiving appropriate support to enable dying at home | One-hour lectures delivered by a physician at a series of public meetings. Lectures covered treatment options and resources available to people who were dying at home. | Addressed known barrier: lack of knowledge of the options available | Quantitative questionnaire survey of attendees before, immediately after and six months after the lecture. | 99% of attendees reported previously discussing end of life concerns with family. | |
Target group: self selected by open advertisement | 607 people attended, 595 completed questionnaire before and immediately after the lecture, 424 at all three time-points. | 95% said the lectures would help in the future. | |||
10% of those completed all three questionnaires stated that home death was possible before the lecture, rising to 37% immediately following the lecture but falling back to 12% after 6 months. | |||||
To engage and educate older people on end of life planning options and processes; as both educators and educated. | Collaboration between academic staff and older people from voluntary agencies to develop an information booklet and peer education programme designed to facilitate peer to peer discussions. | Addressed known barriers: lack of knowledge of the options available and lack of opportunity for discussion | Questionnaires (n = 12) and telephone (n = 8) interviews of people who attended the workshops | In questionnaires and interviews workshop participants reported the booklet and opportunity to discuss issues with their peers to be worthwhile and useful. | |
Target group: people over the age of 65 | Focus groups of the peer educators | In focus groups the peer educators said they found the experience enjoyable and rewarding but most did not feel confident enough to lead a workshop themselves. | |||
Hartley[47] London, UK | To change perceptions of death and dying among school children and their families | Project which brought school pupils and hospice users together to answer children’s questions and work on an arts project of their choice, and which ends with a presentation of the project to parents. | Addressed known barriers: fear of death and dying, lack of knowledge of the options available | Ongoing evaluation: questionnaires, including space for free text, completed by all participants. | Qualitative analysis of free text responses identified ‘normalising death and dying’ as a major theme for the children involved. |
Target group: school pupils, teachers, parents and hospice users | The exact sample size was unstated, although by the point of analysis, as the project had been run over 40 times. | Example: “....we thought they’d all be miserable and depressed.......but it was just like being with your friends.....we laughed and cried and sometimes felt afraid, normal things....” (16 year old pupil) | |||
Sanders et al.[44] Various locations, UK | To educate people with long term health condition about end of life care planning | Short learning module within a much wider generic ‘expert patient’ course designed to teach people how to better manage any long term health condition | Addressed known barrier: lack of knowledge of the options available | Qualitative analysis of interviews with people who attended the course, using purposive sampling for maximum variation and across all areas of England 2(n=31). | The majority of participants thought the advance care planning module was inappropriate in the context it was introduced. Some people, who had recently been bereaved, felt distressed during the session. |
Target group: People diagnosed any long term health condition, who self-referred onto the course. Participants were not made aware of the end of life care planning module in advance of the course. | |||||
Hickey et al.[32]Essex, UK | To educate and engage the public in discussing end of life issues | Well-advertised public information roadshows were held in two busy town centres. People who attended were invited to complete an end of life planning questionnaire, with support available to respond to any queries arising. | Aimed directly to encourage people to consider and discussed their end of life preferences; also addressed the known barrier of lack of knowledge of the options available. | Record keeping and observation of staff who delivered the intervention | The events were reported to be well attended by people of all ages. More than 450 people completed questionnaires, 70% of them female. |
Target group: members of the public attending a town centre outdoor event with an end of life theme | Staff observed the process of completing questionnaires help start discussions about end of life wishes among people who completed the activity together. The authors also reported that many people also accessed information, support and referral as a result. |
Quality of included studies
Study ID | Aspect | Assessment | Score | Comments |
---|---|---|---|---|
Miyashita et al.[45] | Abstract and title | Good | 4 | |
Introduction and Aims | Good | 4 | ||
Method and data | Good | 4 | Questionnaires not presented but described in detail | |
Sampling | Good | 4 | ||
Data analysis | Good | 4 | ||
Ethics and bias | Good | 4 | ||
Findings/results | Good | 4 | ||
Transferability/generalisability | Good | 4 | ||
Implications and usefulness | Good | 4 | ||
Total
|
36
| |||
Seymour and Clarke et al.[41] | Abstract and title | Good | 4 | |
Introduction and Aims | Good | 4 | ||
Method and data | Good | 4 | ||
Sampling | Good | 4 | ||
Data analysis | Good | 4 | ||
Ethics and bias | Fair | 3 | Ethical approval not relevant, evaluation study. Presents discussion of limitations. | |
Findings/results | Good | 4 | ||
Transferability/generalisability | Good | 4 | ||
Implications and usefulness | Good | 4 | ||
Total
|
35
| |||
Hartley 2012
| Abstract and title | Poor | 1 | Abstract not normally expected in the format of a book chapter |
Introduction and Aims | Good | 4 | ||
Method and data | Fair | 3 | Questionnaires not presented | |
Sampling | Good | 4 | ||
Data analysis | Fair | 3 | Described simply as ‘content analysis’ | |
Ethics and bias | Fair | 3 | Ethical approval not relevant, evaluation study | |
Findings/results | Good | 4 | ||
Transferability/generalisability | Good | 4 | ||
Implications and usefulness | Good | 4 | ||
Total
|
30
| |||
Sanders et al.[44] | Abstract and title | Good | 4 | |
Introduction and Aims | Good | 4 | ||
Method and data | Good | 4 | ||
Sampling | Good | 4 | ||
Data analysis | Good | 4 | ||
Ethics and bias | Fair | 3 | Ethical approval not relevant, evaluation study | |
Findings/results | Good | 4 | ||
Transferability/generalisability | Good | 4 | ||
Implications and usefulness | Good | 4 | Focussed on acceptability rather than outcomes | |
Total
|
35
| |||
Hickey[32] | Abstract and title | Fair | 3 | |
Introduction and Aims | Fair | 3 | ||
Method and data | Fair | 3 | Simple observations reported, but not clear who did the observing | |
Sampling | Good | 4 | Not applicable, descriptive observational study | |
Data analysis | Fair | 3 | Not applicable, descriptive observational study | |
Ethics and bias | Fair | 3 | Intervention and evaluation methods had few ethical and bias issues | |
Findings/results | Poor | 2 | Did not quantify the numbers of people who engaged in discussion and provided only one example; however this was not the main topic of the paper | |
Transferability/generalisability | Good | 4 | ||
Implications and usefulness | Good | 4 | ||
Total
|
29
|