Two overarching themes were identified. Finding altruistic value in trying to improve the future care and contribution to future research by being an active collaborator in the research team portrays the perspectives and experienced value related to working in a project that aims to plan future studies and improve the care of expectant parents. Experiencing mixed feelings of personal benefits and simultaneously reliving traumatic experiences when meeting peers portrays the aspects related to finding personal benefits and psychological adaptation by participating in group meetings, but simultaneously experiencing stressful emotional difficulties when reliving previous experiences.
Finding altruistic value in trying to improve the future care and contribute to future research by being an active collaborator in the research team
Having the opportunity to contribute to future research was highly appreciated, and respondents felt like they were listened to and taken seriously when collaborating in the project. Having a potential impact on future studies was a positive experience associated with pride, gratefulness and hopefulness. The respondents felt like active and influential collaborators during the course of the project. They called attention to the value of using PPI when developing relevant and high-quality information for expectant parents, as information could be produced according to the preferences and needs of the intended consumers.
I do feel that the actual decision that we reached, that a website is the best format, that decision was made by the group. I consider the collaborating researchers as part of the group. (Male 1 with terminated pregnancy).
Respondents valued that they were invited to collaborate in the project. They considered PPI a tool with great potential to offer researchers valuable insights, so that they may conduct studies that correspond to the needs of expectant parents. From their perspectives, research projects that do not use PPI are at risk of being overly theoretical and not grounded in the needs of the population. The respondents felt that researchers who collaborate with persons with lived experience can gain new insights which may otherwise be overlooked or disregarded.
I think it’s necessary to conduct this type of research, where you involve people with this type of background. Otherwise, it’s a great risk that you disregard certain important things, that researchers develop something that does not fully captures the actual problem. (Father 1, parent of a child prenatally diagnosed with heart defect).
Being an active collaborator in a research project that aimed to improve the care of persons faced with a prenatal diagnosis was highly appreciated. Respondents felt that their contributions had a deeper meaning, since it had the potential to result in an easier and less stressful situation for those presented with a diagnosis. The possibility to further improve the care was a decisive factor that drove them to take part in the project, even if it meant processing stressful emotions. Having contributed to improving the care involved positive feelings with a sense of personal value and pride.
It’s a sense of personal value to feel that I have [contributed with] information. That I have gone through something that can help others. And that makes it, well, it’s great that I have something to offer. (Male 2 with terminated pregnancy).
Issues related to PPI were also expressed. Some experienced the scope of the project too narrowly, and thus, felt like it did not allow them to fully express or propose other potential research topics of interest. Another issue involved the constellation of members in the groups, including having the possibility of attending meetings together with their partner, which had not been possible for one respondent because of personal reasons. Others felt that some members were not as active in the discussion as themselves, and thus felt a need to constrain themselves to let others have a chance to take part in the discussions. At times, it had been difficult to fully contribute to the work because some of the activities had a high degree of difficulty and required knowledge about research methodology.
I was one of those who talked rather much even if I tried to hold back because I didn’t want to talk too much, since I wanted others to also come forward. (Father 1 of child prenatally diagnosed with heart defect).
Experiencing mixed feelings of personal benefits and simultaneously reliving traumatic experiences when meeting peers
Respondents described that, on a personal level, they experienced mixed feelings about participating in the project. Participating as a collaborator in research involved dealing with stressful feelings when talking about their experiences related to the prenatal diagnosis, resulting in thoughts and emotions that felt difficult to manage. On the other hand, taking part in the discussions presented an opportunity to talk about and process their experiences, which lead to psychological adaptation. Venting their feelings and experiences together with a group of peers with similar experiences was considered an emotional relief and felt liberating.
It was also, in some ways, a help to move forward. [...] It felt like a relief, and also in some way, um, mostly I consider that it felt nice, that’s probably really all I can say. Then, of course, sometimes I left [the meetings] and felt sad, but that was not because of the group but rather because it tore up thoughts about it all. [...] It also became a follow-up for what you had experienced because, from the perspective of the healthcare system, it’s like, after the termination you don’t have any kind of contact with the healthcare system at all. So it was mostly like it [the PPI work] allowed longer time, in some way to let it all sink in. (Female 2 with terminated pregnancy).
Collaborating with others who shared similar experiences presented an opportunity to emotionally connect and bond with peers that understood their experiences. The magnitude in which these peers could understand how it is when being presented with a prenatal diagnosis of fetal anomaly was considered special and on a deeper level compared to friends and relatives.
It felt nice to... Well, it’s nonetheless others [...] who have similar experiences. So it’s nice to have an opportunity to compare a little, talk about how it all felt. It was other people there who understood the dilemma you go through. (Mother 3, parent of a child prenatally diagnosed with heart defect).
Respondents with terminated pregnancies pointed out the experienced difficulties finding peers who shared similar experiences. Talking about their experiences was considered a taboo subject not discussed with people around them in their social networks. Thus, meeting other persons with similar experiences gave those involved an opportunity to talk about subjects that they did not talk about in their everyday lives. This was highly valued and seen as a way to emotionally process the traumatic event. The peer-to-peer interaction served as a confirmation that they were not the only ones who decided to terminate the pregnancy and was a way for them to validate their decision.
I did not have any contact with someone who had experienced the same thing, so it [participating in PPI work] was also in some way a chance to process together with others who had been in the same situation. (Female 2 with terminated pregnancy).
Taking part in the project was valued because it felt like their perspectives were considered important and mattered to researchers. By contributing to the project, respondents felt listened to and validated by persons who felt genuinely interested to hear about their opinions and experiences. As collaborators in research, they also felt a great trust placed upon them.
It felt like, even if [the researchers] had not gone through the same thing as us, that it felt very nice. They listened and were very interested, genuinely interested to learn about what we had experienced, what we thought could change, and what we thought you could do to help others in this situation. It felt very welcoming. (Female 1 with terminated pregnancy).
A need for trust between collaborators was seen as necessary before feeling comfortable to disclose personal perspectives. The longitudinal method was appreciated, as it fostered the possibility to feel more and more comfortable as the project proceeded. Towards the end of the project, respondents had established a personal bond with each other and felt comfortable to speak freely. The fact that the project used face-to-face meetings was valued, as long-distance solutions such as web-based discussions would not have resulted in as honest and openhearted exchanges as the face-to-face meetings did. The respondents also called attention to the importance of well-sized groups of collaborators.
In the beginning, there was a phase when we got acquainted with one another, when you are supposed to get to know each other and establish trust for one another [...] I can imagine that the researchers had a rather difficult time trying to get us going with discussions. But in the end, they had more difficulty getting us quiet so that they could get us to talk about the topics that they wanted us to talk about. (Male 2 with terminated pregnancy).