The analysis revealed an outcome space consisting of one main category, ‘A way to alleviate feelings of loneliness’, and three descriptive categories consisting of parents’ qualitatively different perceptions of participating in FTI, all described on a collective level. The descriptive categories were as follows: [1] support from professionals and peers [2], strategies to manage strong emotions and difficult issues, and [3] Supporting children to manage the situation. In this context, the term ‘support’ is directly linked to which aspects the participants in the study perceived as supportive in FTI.

The main category summarises the findings at a higher level of abstraction and could be further understood by the descriptive categories. ‘Strategies to manage strong emotions and difficult feelings’ and ‘Supporting children to manage the situation` were mutually influencing, but superior to ‘support from professionals and peers’. The latter descriptive category, contains descriptions of perceptions of FTI as a phenomenon, and is a prerequisite for the remaining two descriptive categories.

The Outcome space can emerge differently in various studies and settings, in terms of various hierarchies [34]. The outcome space i.e. the relation between the main category and descriptive categories in the current study, is illustrated in Fig. 1. The figure is organised hierarchically, starting from the descriptive category “support from professionals and peers” and moving upwards to the main category “A way to alleviate feelings of loneliness”.

Fig. 1

Illustration of the main category, the descriptive categories and their relationships

A way to alleviate feelings of loneliness

The main category is made up of perceptions that participation in FTI is a way to alleviate feelings of loneliness. At the same time, the parents perceived that if this was to be achieved, the structure and timing of the intervention needs to be adapted to the families’ individual needs. Parents’ perceptions of the timing of FTI varied both according to individual preferences and according to where the ill parent was in the course of the illness at the time of the intervention. Some perceived it as beneficial to participate while the ill parent was still alive and, thus, able to share thoughts and feelings with the rest of the family; the parents perceived that the intervention contributed to greater openness within the family. However, the ill parent’s participation required that the parent still was healthy enough to participate. In cases where families were not able to share their thoughts and feelings because of cognitive limitations that made this impossible, the coparents perceived that the intervention came too late. Greater openness within the family seemed to prevent loneliness, whereas a lack of openness appeared to increase the level of perceived loneliness.

Parents who perceived it as positive that the intervention came early in the course of the illness described that it reduced feelings of chaos and loneliness. Some perceived a relief from the structure FTI provided because it supported decision-making. Others expressed a desire that FTI should be a mandatory intervention for families in difficult situations because it is easier to attend meetings than to initiate support services on one’s own. On the other hand, there were families who perceived that FTI came too early because the chaos they were in was initially overwhelming, making them unresponsive to support provided by the intervention. These families were in greater need of other forms of support, such as crisis management. Support by means of FTI provided when the family is receptive prevents loneliness, while FTI to not mentally ready and/or motivated families is counterproductive.

In addition to the timing of FTI, parents stressed the need for more support after the FTI had ended. The majority of parents perceived that FTI should consist of a greater number of meetings and that the meetings should take place over a longer period of time, that is, over the course of illness and also after the death of those family members left behind. They suggest that the extended support should be adapted to the individuals’ needs and different phases of the illness trajectory, that is, perceptions of content related to practical issues such as adapting the home to the needs of the ill parent, information and preparation of the children for the death of the parent, financial issues such as sickness benefits and wills and bereavement support. The perception of loneliness was strengthened when support meetings through FTI ended and the parents felt left alone with unmet needs.

Support from professionals and peers

This descriptive category was a prerequisite for the main category and consists of varied perceptions regarding the meaningful traits of the professional interventionists, FTI as an intervention programme in itself and new friendships acquired in conjunction with FTI.

Through FTI, families were able to meet FTI-trained interventionists. A common perception among both ill and coparents was that it was positive to meet someone outside the family who was a professional with specific knowledge in palliative care.

. It was nice to be able to share thoughts with other people who understood the situation and did not back down. They were not afraid to get into this conversation. ….

Participant number; four.

There were variations in what parents perceived as meaningful in the professional support they received through FTI. Some emphasised that professionals with a genuine understanding of the situation were important, as well the certainty that they in their role and competence dared to raise sensitive issues. Others emphasised that FTI was a part of a research project, which contributed to the parents’ perceptions of the intervention as a promising form of support. Previously demonstrated promising effects through scientific testing gave the parents faith that the intervention could also help them in their situation.

… For those who are sceptical, you can say that this is based on science. The intervention is based on research and follows a pattern, and it has proven to be helpful … I think that is an important argument to emphasise. ….

Participant number; seven.

FTI interventionists mainly facilitated family communication, but also some practical help (e.g., organising meetings with the school, assisting with the procurement of aids, help with filling in applications, etc.). This was perceived as positive by both the ill and coparents.

The interventionists contributed to the possibility of meeting others in the same situation as themselves by facilitating contact with other families. The parents perceived FTI as positive, and their new network was used in different ways: discussions about difficult feelings and emotional support, practical help and people to socialise with for pleasant events.

. Yes, we have a difficult loss in common. But it’s not like we always sit and cry … we have fun when we meet, we are friends and we have a good time together. ….

Participant number; two.

For most parents, the friendships created during their participation in FTI were still ongoing today, years after the intervention was over. Just knowing that there were others in the same situation as themselves, whether they saw them or not, was perceived as helpful and made some parents feel less alone.

Strategies to manage strong emotions and difficult issues

This descriptive category was built on the perceptions of how FTI facilitates strategies to manage strong emotions and difficult issues through family communication. The perceptions varied in the parents’ attitude prior to the intervention, involvement of the children and the continuation of family meetings post intervention.

There were variations among parents’ perceptions of both participating and family communication before FTI started. Some perceived FTI as ‘a gift from above’ and that the interventionists had come to relieve them of everyday challenges. Some coparents were hesitant at the beginning of the intervention but had positive experiences both during and afterwards. They were worried that challenging topics could be difficult to manage because, before FTI, there had been challenges within families to have these dialogues, and these perceptions were independent of the family situation. However, participating in FTI was perceived by the parents as giving strategies to manage strong emotions and difficult situations within the family, and some still perceived the participation as meaningful as they continued using the learned strategies. Several coparents perceived that FTI brought family members closer together, both during and after FTI. They perceived that these conversations on sensitive issues would probably not have taken place without the given strategies:

… you got into these difficult things … what would happen, are you afraid of dying? … and really difficult things like this. And we couldn’t talk about that with each other at all! ….

Participant number; eight.

The challenging dialogues consisted of fear of death, dying and grief, difficult emotions such as anger, anxiety and depression combined with the physical expression of difficult emotions. The strategies obtained through FTI were perceived as particularly valuable in families where, for example, difficult emotions were rarely talked about:

… It’s especially important for families [us] who come from other cultures, to get that support and that help because it’s not as common to talk about … especially about one’s feelings and anxiety and depression and stuff like that. ….

Participant number; three.

FTI was perceived as valuable support for the families, both by the participating ill parents and by the coparents because they were all in a difficult situation, which had previously made it difficult to bring these sensitive issues up with their children. At the same time, there were parents, both ill and coparents, who perceived that the children were reluctant to engage in this dialogue, which made it difficult for their parents to support them. This was experienced both during and after the intervention, and some thought it was related to the children’s individual needs. The parents perceived that each child had individual needs and that this did not necessarily come out clearly via FTI because of the few meeting times. Most parents perceived that they needed more help in how to support their children and that more meetings would help them meet their children in a more appropriate way. There was also uneasiness among the parents in relation to the future development of mental illness in the children, which came several years after the parent had passed away. Worrying about the children’s psychological development was perceived as an extra burden to carry in an already challenging everyday life for most parents. The parents wished that the interventionists had followed up with each individual child over time. In addition, they also wanted to be supported in their parenthood during difficult events such as bereavement: ‘… I think you can do this, your children seem to need this …’ Participant number; one.

There were variations in the parents’ perceptions of how they maintained the family meeting structure that FTI also included after FTI had ended. Some families structured their daily lives to allow more time for family meetings and communication since participation in FTI. This was perceived as particularly important among coparents, who, after death, managed everyday challenges on their own. On the other hand, after the death of the ill parent, there were those who found it challenging to do things together as a family, including family meetings, because of changed family dynamics. The deceased parent had left a space that was difficult to fill, and family activities were no longer perceived in the same way. When the ill parent was alive, several of the families also received additional support (e.g., contact with psychologist, counsellor and support groups) after FTI, and they were then able to handle the family meetings. After the parent’s death, the support disappeared, and it became more challenging to maintain the family meetings again.

Supporting children to manage the situation

This descriptive category is built from the parents’ perceptions regarding the children’s experiences of FTI, individual versus group meetings and unmet needs in the children. The most frequently mentioned motivation for participation in FTI was the parents’ wish for more support for the children.

There were variations in the parents’ perceptions of what benefit the children had from FTI, both during and after the intervention. In some families, the parents perceived that their children had received sufficient support during the intervention, as evidenced by their children being calmer and more confident in the situation afterwards.

Some coparents perceived that FTI was of the greatest value to the child, while other parents, both ill and coparents, perceived that support was insufficient for the children after FTI. These parents were still worried that the children did not speak about their feelings, which was perceived as a risk to their mental well-being.

… My son really needs to go talk to someone! He reacts in exactly the way you understand he really should; he reacts with anger … And I hope that he takes that opportunity to get help sometime instead of him possibly crashing. ….

Participant number; five.

There were variations in perceptions regarding whether individual or group meetings with peers were the best solution for the children’s support needs. Some parents perceived that it was positive that the children had separate meetings during FTI because that gave opportunities to speak openly about their own feelings. Both ill parents and coparents described how FTI had made the children talk about things that worried them, thus giving the family an opportunity to deal with the children’s concerns related to sleeping alone, nightmares, fear of the ill parent hurting themselves and perceptions of the parents being angry. Concerns were not always known by the parents.

… I do not think individual conversations are always the best for the children. They should be given the opportunity to join groups and meet others and share each other’s experiences and grief in some way. ….

Participant number; nine.

There were also variations in the parents’ perceptions of what kind of support their children needed. Some perceived that their children wanted support to lead a normal life and that they should receive more support regarding that during FTI. Others perceived that the children should get early help from professionals and should be told that all emotions, regardless of what they may be, are normal.