Being involved in research as a collaborator with experience of a prenatal diagnosis of congenital heart defect in the fetus: a qualitative study

Abstract

Background: An increasing number of research projects are now collaborating with persons who have lived experience of a specific health-related situation, such as a prenatal diagnosis of congenital heart defect. Such collaboration has the potential to provide valuable insights how to plan future studies, but little is known how these persons experience such involvement. The aim was to explore how persons with lived experience of a prenatal diagnosis perceived collaborating in a research project utilizing patient and public involvement to identify relevant research questions and develop suitable interventions. Methods: Persons with experience of a prenatal diagnosis of congenital heart defect in the fetus were interviewed after their participation in a yearlong collaborative research project (n = 9) aiming to explore relevant research questions and develop interventions for expectant parents with a recent prenatal diagnosis. Interviews were analyzed with qualitative content analysis. Results: Respondents acknowledged altruistic and personal value related to the collaboration. They valued the opportunity to contribute to future research so that the care of persons experiencing a prenatal diagnosis may be improved. Mixed feelings were described related to sharing and reliving experiences. While it had been emotionally difficult to relive a traumatic event, it also served as an opportunity to process experiences and psychologically adapt. Respondents with terminated pregnancies appreciated the possibility to meet peers, since it was difficult to find peers in everyday life and talk about their experiences with others. Conclusions: Researchers who plan to collaborate with persons who have experience of a prenatal diagnosis should be mindful of the potential associated emotional experiences. The appreciation related to meeting peers calls attention to the need for studies that explore peer support.

The experience of patient partners in research: a qualitative systematic review and thematic synthesis

“…The most commonly described motivations were related to a desire to help [ 19 , 24 , 26 – 33 , 35 , 37 – 39 , 41 , 48 , 49 , 55 – 58 ]. Specifically, patient-partners wanted to contribute to better research [ 26 , 32 , 33 , 48 , 49 ] and to improve healthcare [ 19 , 26 , 28 , 32 , 33 , 35 , 39 , 48 , 49 , 55 – 58 ], most often with a general desire to help other patients [ 19 , 26 – 29 , 31 , 33 , 35 , 37 – 39 , 41 , 49 , 55 – 58 ] or their communities [ 27 , 29 – 31 , 58 ]. The benefit of others was often described as the ultimate goal of patient-partners, while improving care and research were seen as the means to this end [ 26 , 35 , 38 , 39 , 49 , 55 , 58 ].…”

“…Challenges in tasks arose from the novelty of research methodology [ 28 , 51 ], the complexity of topics [ 23 , 28 , 34 , 59 ], and the intensity of activities [ 19 , 33 , 45 , 47 ]. This last challenge was seen in long meetings, for which sustained attention was necessary [ 33 , 47 ].…”

“…For others, however, challenges were overwhelming or exhausting, and more support would have improved their experiences [ 23 , 28 , 32 , 34 , 59 ]. “I tend to speak a bit less because the really technical subjects are more tricky so I’m listening very hard to think what they’re actually talking about … sometimes at those meetings I feel rather out of my depth.” (PP) [ 34 ] …”

“…Concretely, this was associated with their perceived impact on research projects. In most articles, patient-partners felt that their contributions had had an impact [ 19 – 22 , 24 , 25 , 28 , 30 – 34 , 37 , 38 , 41 , 43 , 44 , 46 – 48 , 51 , 52 , 54 , 57 , 59 ], but in others, they felt that they did not significantly influence research [ 25 , 30 , 31 , 37 , 39 , 44 , 52 , 54 , 56 ]. The latter situation was often linked to dismissive or closed-minded behaviors of professional researchers [ 25 , 31 , 52 , 54 , 56 ], which are discussed at greater length in team dynamics .…”

“…Activities for which patient-partners were well prepared [ 41 , 44 , 45 ], which were clearly structured [ 41 , 57 , 59 ], and which focussed on practical issues [ 39 , 44 , 47 , 59 ] were said to lead to more significant engagement. When patient-partners felt that they participated meaningfully, they reported a sense of usefulness and of contribution to society and to other patients [ 23 , 25 , 26 , 28 , 37 , 39 , 41 , 46 , 48 , 51 , 57 – 59 ]. “It is important that I am able to contribute to society in general, and it gives me a feeling of joy and satisfaction.” (PP) [ 39 ] “It also feels great to have a hand, however small, in making a change or a difference to people’s lives, being stigmatised is nasty, lets help it stop.” (PP) [ 23 ] …”