All participants were white; 70% were female (n-19) and 70% were either married or cohabiting (n-19). The largest proportion of the sample 44% was aged under 50 years (n-12), with 22% aged between 50 and 59 (n-6) and 33% (n-9) aged between 60 and 84. Over half of the sample was employed (n-15), 15% were self-employed [4] whilst 26% were retired (n-7). Demographic data were missing for one of the included participants (see Table 2).

Table 2 Participant demographics

Responses to questions relating to ACP knowledge and behaviours found just 12 participants had heard of the term ACP prior to completing the Northern Ireland Life and Times Survey. Furthermore, none of the participants had been offered the opportunity to discuss ACP and none had prepared a plan of their wishes and preferences.

Main findings

Three overarching themes were generated from the data: ‘Visibility and relatability’; ‘Embedding opportunities for engagement into everyday life’; ‘Societal and cultural barriers. These findings were then mapped to the five social ecological model (SEM) levels (individual; interpersonal; institutional; community; and policy) to demonstrate the importance of a multilevel approach when seeking to engage the public around PC and ACP. See Fig. 1 for SEM construct mapping.

Theme 1: visibility and relatability

This theme relates to the suggestion that social taboo was a barrier to awareness and the mechanism to ameliorate this was visibility – in turn promoting reduction of stereotypes and promoting understanding and engagement. This posits the idea that the lack of understanding of PC is the root cause of much of the stigma surrounding it. The SEM construct mapping suggests a multilevel approach is required with intrapersonal (increased individual understanding), interpersonal (openness in discussion with friends and family through media normalisation) and institutional (health service policies for promotion and support) levels being identified.

Participants discussed how there is a lack of knowledge on what PC is, with many assuming that it was for people in the latter stages of life or facing end of life care. This highlighted the lack of individual education with participants suggesting that there should be more visibility and promotion on PC and ACP so that individuals are better informed.

“So, it’s really um there needs to be more education, maybe, I think around it. So that people can view it maybe differently or you know talk about it a bit more. Yeah, probably demystifying what it is. This is this is what it is. This isn’t what it is. You know, this isn’t about um, ending your life for you, you know. And this is about giving you choices and ensuring that you know, you know people are here looking after you”(P37538F45).

However, there was a recognition that individual differences play a part in whether people engage in discussions. A number of participants explored the idea that some people just don’t want to talk about death and that for some it was not a subject that they want to approach. Despite this, there was a sense that increasing visibility was considered important as there will still be many people who are willing to increase their knowledge and understanding of PC and ACP.

“I can talk about it, for example, with one of my sisters, but not with my mom and not with my other sister or my brothers. They just refuse point blank to talk about it…. some of them have done and the others have started crying and just shut me. Shut me off. And just. No, we don’t want to talk about that. So, it just depends on the personality, I suppose” (P14876F59).

The lack of knowledge and awareness of PC and ACP was suggested to be the attributed to the scarcity of information being made available at a more institutional level. For some participant’s, this was felt to be the responsibility of the health service to ensure the knowledge is out there and being promoted.

“I think people are naive and they know they’re not at that stage and they don’t know what palliative care is, you know. It’s all like it’s ignorance. But our health service is not promoting this. Well in my eyes, they’re not promoting it whatsoever. And they should, they should, because it would help a hell of a lot of people” (P37172M61).

“I and I think it needs to be promoted by the point of contact, whether it’s a GP, National Health, whatever it might be, I think when they’re there, there needs to be a bit more encouragement to have that conversation” (P26495M43).

The lack of visibility within the general practice was discussed by several participants who said that leaflets and posters would be helpful in increasing visibility. One participant went as far as to say that a member of staff within a GP surgery would be beneficial.

“I suppose the palliative care because it is a bit more personal. There should be even maybe a professional that you could talk to in your GP practice, or you know, like they have mental health practitioners now in GP practices. Maybe there are I don’t know if there is or not, but there should be maybe a palliative health practitioner that talks to people when they are at that stage of their life” (P21647F29).

Participants also noted how there were generational differences in how people accessed health information. Many of the participants suggested that they would turn to the internet and ‘google’ for information, however, the suggestion was made that care should be taken to target awareness campaigns to different age groups via different methods to reduce disparities in technology skills such as those with less computer literacy.

“I think a certain proportion of society need the visibility because they’re not always going to be self-sufficient enough to jump on the Internet even though you know we’re getting to the point now where the generational thing is. The generation have been brought up with the Internet and they’re obviously they go to it as the first point of call. But we still got the generation at the moment that don’t”. (P25046F-)

One of the participants talked about ways to increase visibility via the use of the media, including social media, and the utilisation of famous faces.

“Yeah, I think you know, they need to discuss it on Loose Women. You know, morning TV need to get on the bandwagon….But you know. It only takes like that one celebrity to mention it and then the whole media is jumping on the bandwagon.” (P19874F-).

The UK media coverage of other successful campaigns such as those highlighting mental health and bowel cancer were noted to have been particularly helpful in raising awareness.

“if I think myself about the whole exposure that we have and as a society at the minute about mental health in general, you know a lot of the work on that has been done via social media. You know, celebrities hash tagging and talked about their experience. It’s OK to not be OK etcetera. And I feel like that is responsible for a lot of people who are now discussing their mental health” (P21647F29).

The sentiment expressed in the above quotes regarding increased visibility in the media also suggests that unless a topic seems relevant to an individual then they won’t engage with health promotion. This concept of relatability pertains to those aspects of human empathy where they can place themselves within a situation leading it to become more relevant to them.

Many participants discussed that using real-life stories on television and in campaigns would be an effective way to connect with the public and it would make PC and ACP more relatable and highlight the importance of thinking about it.

“I think always what tends to be most effective is when it’s somebody that we could all relate to telling their own story (…)……I’m not too sure I know enough about what it involves, but really, like the consequences, that the consequences that people have suffered from not having done that. Not knowing what the wishes were, not having planned for it”. (P32288F62)

Several participants discussed how the topics of PC and ACP were not something they would identify with as being relevant to them. The suggestion was that without it being an immediate concern, for example, if they were not approaching a certain age, then they would assume that they did not need to increase their knowledge about what PC or ACP involves.

“You have to be able to relate to it in order to think, oh, yeah, that applies to me. You need to have something in which you identify with”. (P13697F51)

Theme 2: embedding opportunities for engagement into everyday life

Throughout the discussions, there was evidence that participants felt that death literacy could be increased by providing more opportunities to gain knowledge about planning for future care and what PC involves. Education was highlighted as a potential pathway to engaging the public by targeting appropriate age groups and professions with relevant knowledge and skills. For some, this was thought to be best achieved through educating the youth and for others, the importance of educating those who are working in the healthcare profession was particularly salient. In addition, almost half of the participants suggested they would approach charity organisations for information, with participants advocating for education within secondary and tertiary levels and within community organisations. This data reflects an institutional-level construct within the SEM framework.

Educating younger generations on the topics of PC and ACP through open discussions in schools, and providing skills on how to have difficult conversations with loved ones were seen to be a valuable strategies.

“young people don’t have that ability to accept and admit and bring it out into the open and I think they need to be perhaps encouraged more to do that through some kind of teaching in the school environment when they’re at a young and impressionable age”. (P25046F-)

Due to the difficulties around having conversations about death, it was suggested that different healthcare professionals should be trained to have conversations with their patients.

“Yeah, it’s like you think the discussions are difficult to broach for maybe health care professionals that you know, a difficult topic even for them to bring up. Well, if you’re working with someone who’s you know with a family and where things are quite distressed and very often it can be either, it can be the stress can cause a lot of friction and you know, decision making can be very difficult for people…., but just at every level, there’s, you know, possibility to be having conversations like that with people.”(P37538F45).

“I suppose you could think about training some care professionals (…) there may be some way that as a second part of the person’s job or whatever that they’re trained so that people could go along and discuss ” (P19265F76).

Further to education for young people and healthcare professionals, there was the recognition that community organisations are perfectly positioned to educate the public in PC and ACP. One participant highlighted the missed opportunity to educate family members and carers through an existing programme on dementia. This is particularly pertinent to ACP due to the impact of cognitive decline on decision-making.

“I went to zoom meetings for four weeks in a row with the Alzheimer’s Society. Umm regarding things to do with dementia. And you know, there was a week about your finances and things like that. I suppose. They never really talked about end of life care you know that sort of thing. Um I suppose it would have been useful had they you know, broached that subject as well. But it wasn’t, you know, there was more about looking after yourself, looking after the person. The symptoms of dementia and all this sort of thing, Alzheimer’s and then you know, um the financial and the help available to you. You know, but they didn’t mention about the end-of-life care and like the end result of dementia, I guess, is death. So, you know that that subject, you know, I was, I suppose to just those organizations that deal with um the issues of, like dementia or, as you say, all the rest for, you know, the rest of the diseases and that. You know to be up front and honest and say you know where this can lead and to make people you know, make people aware that there is a palliative care process that can be gone through.” (P19874F-).

Furthermore, the option of a helpline was suggested with reference made to other successful charity helplines such as the National Society for the Prevention of Cruelty to Children (NSPCC) and The Samaritans. Whilst it was acknowledged there were specialist support services available for people living with a terminal diagnosis, there was a sense that a generic information support helpline would be helpful.

“You know, people need to be (aware)… they’re not alone. There is help out there. You know, you see your helpline, your children, NSPCC, your Samaritans. All on all these helplines, I have to think, I’ve never seen a helpline for palliative care or who you can contact. You don’t see things like that.” (P22964F52).

In addition to education, the suggestion that embedding ACP discussions into other more common aspects of future planning such as will making, and organ donation was postulated as a potential way to engage the public. This demonstrated clear links to the policy and institutional level constructs within SEM. Changes within organisational policies and public law to support individuals to consider future planning would promote better engagement on a wider societal level.

Participants suggested that they would like to see some of the conversations surrounding ACP introduced into workplace policies and guidelines, as well as through other legal discussions. They noted that conversations surrounding future planning already occur when discussing legal wills and workplace pensions. The potential to expand these discussions to include ACP with solicitors and in workplaces was seen to be a missed opportunity.

“So maybe um around people who are making their wills and you know, you get will making services advertised and things like that. And I think once you get into your 30s and 40s, people start thinking about a will and things like that. So maybe aligned to something like that, you know would get younger people.” (P13790F67).

“when people talk about the pension, you know so retirement, you know, to make people aware about this as well. You know, I would say that’s probably good ways to reach people” (P21263M54).

Current legislation and promotion regarding organ donation were discussed as being successful in engaging the public and therefore implied that the government should take a more active role in the promotion of ACP.

“If you look at the way, sort of, government have been promoting like organ donation and that. You know that sort of thing. And then people have really bought into it and you know, and there’s a lot of positivity around it. So, I think that’s sort of similar approach would be good”. (P29453F40)

“You know, people talking about pension, pension plans and so on and it’s part of the natural life circle, you know. So, if it’s in connection with this, you know, so think about your future, make your plans …so probably in connection with organ donation and so on, you know, so I think they could be trigger points, you know,, people talking about this.” (P21263M54).

Theme 3: societal and cultural barriers to open discussion

In conversations surrounding why there was a lack of openness in discussion, participants postulated that a potential factor was the influence of cultural and societal norms. This was found to overlap in the SEM levels of intrapersonal, interpersonal and community.

Rural farming communities were highlighted as potentially being more isolated and traditional in their views around death and dying, whilst those with strong religious beliefs were seen to be less likely to engage in discussions.

“You know, and there is a, I’m out in the countryside. Well, it’s (place name). So it’s a relatively rural sort of conservative place and it and it’s that… you know you’re tied to the land, you’re tied to the farm. This is your home and sending you away from it early it is seen as a bit of a shameful thing. So yeah, to try and educate folk and to try and speak into that I think would be really helpful because again, I’ve seen situations where probably the individual’s life, the end of life, has been made tougher because the family have fought to keep that person at home.…. We’re going to try and do it ourselves” (P26495M43).

“I think it’s probably a lot to do with religion more than likely because people just like to hear, because we still are very much, you know, a lot is dictated by religion. So, people just want to leave stuff in God’s hands so they don’t want to have like…that would be the kind of where my mom and dad are coming from, you know, don’t interfere with it, blah blah blah. So, it’s a very gentle like kind of reminding them, you know, well, I think we do need to think about it. And I think people are afraid that they’ll make again that um it’s kind of euthanasia you know what I mean” (P37538F45).

Cultural differences between countries were also considered with some seeing other global communities approaching death as a celebration rather than something to shy away from.

“I think in Northern Ireland we are, and the UK and probably the world in general. We are really poor at talking about, about death, and it has to be a positive thing to be able to talk more about death. You look at other cultures where you know. Death is treated differently, you know, even in Africa things where, you know, it’s a real celebration, whereas it’s seen so differently in in Northern Ireland” (P31154F35).

Furthermore, regions and countries that have experienced war and conflict were perceived by one participant as a potential barrier to engaging in subject matters which involve death.

“I don’t I don’t know about other countries, but those that grew up maybe during the conflict here, maybe it’s just something that, you know it’s it’s a completely different mindset to them” (P23609M39).

Whilst it is unclear from the data why the participant felt the conflict might inhibit engagement with the subject of dying, it could be interpreted that the participant was suggesting that death is too morbid to engage with following a conflict period which saw numerous deaths. An alternative interpretation could be that people are desensitised to death and do not see death as something that an individual has autonomy over.

It was noted that in many modern societies communities are changing. People no longer interact with their neighbours in the way they used to which results in a reduced sense of community responsibility.

“I don’t know that everyone is as neighbourly as they used to be. Northern Ireland I always perceived as being open door policy and everybody looked out for everyone else. But I think as a society has changed and it has changed in Northern Ireland, and it’s become becoming more closed (…) So I think we need to try and encourage that community um experience back again so that people are mindful of their neighbours and share that responsibility and making sure that everyone’s OK” (P25046F).

This sense of social isolation was discussed by one participant who referred to homeless people. They reflected on how current social structures may not be providing the information and support to this minority group and therefore should be considered when developing public health approaches to engaging them in PC and ACP education.

“And if you look at homeless people on the streets, where do they get the information from? Where do they get the care, the information, the attention. I know there are Street workers that work, but I don’t know again to what extent in Northern Ireland compared with the likes of London” (P25046F).

Mapping the findings to a social ecological model framework

Following thematic analysis each of the resulting themes were mapped to the five socioecological levels identified by McLeroy et al. (1988) for health promotion programmes. Construct mapping can be found in Fig. 1 below.

Fig. 1

Thematic interaction within the Social Ecological Model levels