A total of 21 participants were recruited into 5 focus groups over a period of three years between 2020 and 2023 (Tables 3 & 4). Each focus group lasted between 60 to 90 minutes.
The constructs of the theory:
Preparing for death but not for dying; We are planners of funerals but not of care.
Across cultures many people in older generations prepared for their funerals. In this study several participants spoke of their parents having financial funeral plans, although this was not disclosed by the older adults. There was an openness around funerals and funeral planning. However, as the groups discussed these mainly financial arrangements there was a developing awareness that much of this conversation centres around after death planning. When it come to the process of dying there was an agreement that this was an aspect that was rarely discussed:
It feels different in Ghana it seems so public there, there are posters about funerals coming up, people talk about it, funerals and memorials are more about celebrating the life lived than mourning. (Adult child, African)
In Grenada, ….. they have big billboards up …. it has a photo of the person and all the family (Adult child, Caribbean)
And we've certainly talked about death and funeral plans and all that sort of thing. But I feel talking about death and dying is still very much taboo and not really spoken about. It is something I would like to visit with mum. (Adult child, African)
The older adults in the study had great concern about having everything sorted out to reduce the stresses on their children. They spoke about how their children silence conversations:
When I do talk to my daughter, I start to say, when I am dying …she says, no mum don’t talk like that…. I feel they are all frightened of losing me…so I don’t talk about it because I don’t want to upset them, but I make my own plans… (Older Adult child, African)
These are cultures who have strong open traditions around marking death, visible and shared with the whole community. People are now having to compromise these to fit in with new cultures where funerals are less visible and generally private. The conversational opportunities these intergenerational community funeral events may present are being reduced and a fear of talking about the death of a parent is resulting in a hiatus of conversation between one generation and the next.
Complexity in traditions crosses oceans: Talking about cancer and dying is taboo in our culture. Part of this lack of discussion about dying and illness may be associated with how a fear and taboo around serious illnesses and particularly cancer. Many of the participants who shared their family stories, felt this resulted in a lack of open family disclosure:
When I was diagnosed, I remember having a discussion with my mother about it. An, you know, the kind of distress it caused meant that I was never, ever able to have a conversation with her again, it was because it was cancer and she was petrified, It was a real shame because, you know… your mom's your confidant (adult child, Caribbean)
My brother has cancer, he and I talk… but we don’t talk about it with mum and dad. Dad had the same cancer and now …. so there's a bit of self-preservation with that. (adult child, African)
This sense of fear and taboo remains strong even when families have been living in the UK for a while. As one participant raised this, others recognised that this was a shared experience:
So it's interesting that you're saying that because a close relative of mine who was very ill but didn't say anything and kept it to themselves, I don't know if it's a Caribbean thing…. when you kind of think to yourself, why did I not know, why is it that I'm here in the UK you’re over there in Jamaica. Why am I hearing now, right now. Because it's like if I had known I would have been able to go over (adult child, Caribbean)
This concept has overlaps with the concept of living between traditions (concept 3) and the hysteresis or tension that exists when one cultural practice is very different to another (concept 6). We consider what impact this has on family conversations as we explore the next layers of this constructed theory.
Several participants had experienced serious illness or the death of a younger person within the family. In their discussions they discussed the prevailing funeral tradition of parents not attending the funerals of their children. Although participants discussed how difficult this might have been for the parents concerned there was an acceptance by some that this was an important aspect of culture that needed to be respected:
That’s right, yeah…you know my nephew who died recently, he died over here and it was sudden so although we took him home, his parents never saw him, they did not came to the funeral (Adult child, African)
Yes, I had an older sister who passed but they never saw her and they weren't at the funeral because it is not done (Adult child, Caribbean)
There were several discussions around how there were times when experiences caused a change in what people wanted and that this was perhaps a tension for people, so not openly discussed between family members. Participants, both the older adults and the adult children spoke about situations where they felt they were Living and dying between cultures and traditions: The category of I am a London girl, things are different in Ghana indicated this changing perception of who they were and the challenge of what traditions to keep up with and what different ways of doing things may be more in tune with how they currently perceive themselves. Some of the adult children could see that in their parents as well:
I'm very much westernized, a London girl. And in Ghana, things happen differently, there would be many traditions like painting the house and I don’t think mum would want that, she’d prefer it painted now while she can enjoy it …But the one thing … is…. previously she always said that when she died she… she's talked about….being buried in Ghana. …. there’s a family plot or whatever…. But when my sister died, she did make a comment that…if I die either I don't mind being buried here or in Ghana. .. (Adult child, African)
My mother bought a house, she had always planned to go back to retire .. you know.. but my dad he didn’t want to leave the grandchildren and everything…(Adult child, African)
And yeah, it's like that that's in my family. That has been the dilemma. One parent wanting to go back and one parent just not wanting to go back ever …(Adult child, Caribbean)
Finding yourself part of families with ties to more than one place, each with different sets of rituals and values can make more complex the universal experiences of generational change. This is additionally complex around death rituals which are so tied to the marking of respect which is a very important value in so many cultures.
There is culture, gender and there is personality: Who discusses what with whom. Participants acknowledged that conversations about future care preferences were rare in their families both between generations and within generations. There was an expectation that as adult children they would make future care decisions as best they could, without having discussed preferences, and that this is what was expected of them.
I remember from a young age, my mom doesn't say so much now…. You're the youngest and it's your job to look after us when we're old … (Adult child, African)
So if she becomes less well… what do you think she will want … well that’s going to be my decision. She’s…. She's not going to discuss it. … it's just whatever I decide. That's how it is. (Adult child, Caribbean)
Things were not said as parents tried to protect their children from having to feel responsible for them:
We don't want to bother them. If we can do something for ourselves, we will do it. sometimes we need help with this and that, but we don't want to bother them (Older Adult child, African)
When family members are unwell, care decisions and treatment decision making can be particularly complex when family members are living in different countries. Initially we expected to see reference to a patriarchal approach to who may be considered the best person to make decisions particularly when the older person was unwell and had limited cognition. Some participants spoke about this:
Yeah. And I think it's a culture thing, because I remember when I lost my brother and he was in the States. We had to take his body back home. And we were having a conversation about where he was going to get buried and you know… my uncles were at the forefront… we it's like we have no say. (Adult child, African)
However, as the discussions developed it becomes clear it is much more complex than that, more about proximity and funding.
… when my dad died, he was living in the US with my half-sister, she made she made all the decisions …kind of you know, he was over there. We were over here. oh, my goodness me. it was it was very, very, very, very, very, very tricky (Adult child, Caribbean)
And I think there is a there is a power dynamic going on because frankly, my dad or the siblings who live in the UK they send back money quite often. So .. usually they don’t look after grandma…. But in terms of making decisions, I think they have a lot of say because it seems like if she… needs to go to the hospital, he gets informed ….. (Adult grandchild, African)
Negotiating and planning and funding when family live in different countries adds layers of complexity to an already emotional and difficult process. Several of the participants spoke of the value of modern communication aids like WhatsApp in helping to negotiate in these difficult times. Participants indicated that WhatsApp allowed all parties to be part of the conversation, including our participant who was visually impaired:
Oh, my God, it's amazing. A revolution. It really has. You can make decisions on WhatsApp. You know, …. We were deciding when the headstone for my brother actually this week and the decisions, the discussions were so smooth on WhatsApp. So, it really has helped (Adult child, Caribbean)
Lastly for several participants being part of these focus groups highlighted for them conversations they perhaps had not had but either wished they had had or would like to in the future:
Yeah. My mom passed quite a while now, 18 years ago, and it was very sudden. So, there was no conversation with regards to what was going to happen. And we didn't know what conversation she had with the family there..., that she wanted to be buried in Ghana. So, it was a compromise, she was buried in Nigeria so she could be beside my dad, I still kind of feel bad about it because that was a wish and it wasn't actually done (Adult child, African)
It concerns me now that we're talking about it, that I hadn't had that conversation with my sister myself (Adult child, Caribbean)
As part of the theoretical sampling the final focus group was with younger people who had living grandparents. Analysis of their reflections along with the previous conversations with adult children and older people resulted in this final concept: Watching the death of another prompts conversations: I talk with mum because her mum needs care now. So much of what we do is born out of the way in which we have been culturally nurtured and has developed from watching role models such as parents or other societal members that we aspire to. It is at the point of watching perhaps a family member, a friend or a friend’s parents go through life events like dying, that often stimulates conversations about what went well, what was difficult and perhaps what we would want for ourselves or our parents when it is their turn to die.
I think you don't realise just how much care someone elderly can need unless you're in the scenario of caring for them …So mum and I … we have had that conversation recently, but before my grandma needed so much care, we'd never had that conversation (Adult grandchild, Caribbean)
Many of the older people and adult children in this study had been living in another country when their parents or grandparents had died. The impact of this is that they saw only a glimpse of what went on, resulting in a loss of opportunity to reflect on how it maybe for them when they were dying:
Yes mum was often in Ghana, she went to look after him …. But I didn’t go (Adult child, African)
People of the generation who are now approaching the end of life themselves and their adult children have only had fragmented opportunities to be present at the deathbeds of the generations before them. This rehearsal and potential opportunity to consider what they may want for themselves if in a similar situation and to discuss this with other family members also around the death bed has been lost.
Hysteresis; Inertia and change
Threaded through all the concepts of this theory, is the concept of hysteresis [34]. As families assimilate into new cultures there is a tension between what holds, in terms of existing values, beliefs, and rituals and what changes. This tension is sometimes shaped by the power dynamics of the host culture or how cultural and symbolic capital is distributed [35].
Captured in the layers of cultural experiences was a sense of change, either between participants and their parents or children or even within their own experiences over time. When there are limited conversations between people and a lack of cultural curiosity into the perceptions of others [36], particularly amongst health care professionals, this cross cutting concept of hysteresis and differences in the way experiences are experienced and understood can be hidden.