Confronted with something as fundamental as a cancer diagnosis or death of one’s child, it is generally assumed that sharing the emotional impact of it, in the form of talking about it with the partner, is helpful and necessary in order to cope as an individual and as a couple. Undoubtedly, being able to talk to one another can be a way for connecting emotionally with the partner and supporting each other through difficult times. However, couple communication in the context of childhood oncology or grieving the loss of a child is often challenging. Moreover, contemporary research is far from consistent about the presumed beneficial effects of talking and social sharing about painful emotions.
The overall aim of this doctoral research was to deepen the understanding of couple communication, talking and not talking, in the context of child cancer and the loss of a child. Therefore, we explored the experiences of bereaved couples and couples confronted with childhood cancer, including the meanings they gave for ‘not talking’ with one another about their emotions, or being silent in each other’s presence. In addition, we explored the experiences and views of professionals working with parents whose child is in cancer treatment.
A qualitative research design was used to meet this overall aim. In qualitative research the starting point is usually not a specific hypothesis that needs to be tested empirically. Rather, the phenomenon under study is systematically explored, resulting in a rich description of the phenomenon that is grounded in the data. Such rich descriptions can then lead to fundamental reflections on conceptual issues.
We conducted five studies, each presented in a chapter. Chapters 1, 2 and 4 relate to the exploration of couple communication of bereaved parents, while chapters 3 and 5 are conducted in the context of childhood cancer, including the views of professionals at a child oncology department (Chapter 5).
First, we conducted an exploratory pilot study (Chapter 1) with a bereaved mother and her partner. Based on an in-depth interview, a book she wrote and a text of a presentation she gave, we did a thematic analysis. Following this, we did a narrative analysis where we focused on the evolution of this couple’s sharing and not sharing of grief experiences since the loss. The main storyline involved the need for silence and distance at several points in the process, to protect themselves and the relationship. At the same time, they stressed the necessary moments of connection between them, with or without words. This study introduced a view on couple communication which is dialectic, dialogic and dynamic in nature.
Then we explored meanings related to ‘not talking’ in a second and third study. For our second study with bereaved parents (Chapter 2), we conducted and analyzed twenty in-depth interviews, with twenty-six parents, and did a thematic analysis based on grounded theory methodology. Our analyses revealed four main meanings related to ‘not talking’ about their grief with the partner: not talking (1) because of the inadequacy and pointlessness of words in grief, (2) to create some distance from the pain of grief, (3) as an expression of a personal, intimate process, and (4) because the partner has the same loss but a different grief process (with 4 subcategories: 4.1. Respect and not burden each other’s grieving process, 4.2. The uselessness of words, 4.3. Not enough distance from the pain of the partner, and 4.4. Different grieving styles or moments).
For many bereaved parents, the complex process of talking and ‘not talking’ about the fear of death and loss of their child started from the moment of the cancer diagnosis. Therefore, we decided to broaden our group of research participants, and explored the same research topic with parents whose child was in cancer treatment in our third study. In this study (Chapter 3), we equally did a thematic analysis based on grounded theory methodology. The analysis was done on nine in-depth interviews with sixteen parents. In this study we were immediately confronted with the different context of these parents. Their primary focus during treatment period was the wellbeing and recovery of the child, in a life that was dominated and structured by treatment procedures and frequent hospitalizations. As parents, most of them felt supported by the partner, as a way of “being in this together”. However, they all talked very little with each other about their emotions and thoughts related to their child’s cancer during treatment. Our analysis revealed three main meanings: not talking (1) because of the hospital and treatment context, (2) for selfcare/self-protection and blocking of emotions, and (3) because of each other, (with 3 subcategories (3a) to spare one another, (3b) a different coping, and (3c) because no words are needed between them).
These three studies showed that the parents in our interviews experienced their communication with each other as subject to a lot of complexities, representing both the value of talking and not talking. This led us to explore a dialectical approach to communication in a fourth study with a bereaved couple (Chapter 4). Aiming at a deeper understanding of the complexity of the dialectical process we meticulously investigated a metaphor used by one of the bereaved parents. We used multiple data collection for this study and conducted a thematic and metaphor analysis. This gave us the chance to examine the relational process more in depth. Indeed, the interplay of dialectics was also apparent in their dialogue with each other, on an interpersonal level. The concept of attunement showed extra value in connecting the intrapersonal and interpersonal level.
With our fifth study we broadened our research topic to the communication between parents and professionals working at a child oncology department (Chapter 5). We specifically wondered about how attunement processes operated in this context. Therefore, four focus groups were organized with twenty professionals (psychologists and nurses), in addition to the nine in-depth interviews (study 3), now with a focus on the communication with the professionals. Thematic analyses were done separately on the transcripts of the focus groups and interviews. Both professionals and parents talked about an elevated tension in the partner relationship during oncology treatment of the child. However, explicit attention for the partner relationship in this context felt inappropriate to professionals and parents, as the child is their primary focus now. Furthermore, both professionals and parents emphasized the importance of the professional helpers’ openness for conversation and an attuned response to the parental couple relationship.
Taken together, during our research process we found that the process of attunement is central in our understanding of how partners, confronted with the death or life-threatening illness of their child, talk with each other and leave certain things (temporarily) unspoken or in silence. This corresponds with a dialogical perspective on storytelling. Consequently, a model of attunement reflecting our findings is described. The process of attunement is a moment-to-moment interaction, which includes vertical and horizontal processes. These processes are inherently connected and part of one process, the one resting on the other. Based on these attunement processes some things are brought in the outer dialogue, while others or not (yet). The concept of attunement also brought us to a deeper and broader understanding of the relatedness of talking/not talking and connecting/not connection (or closeness/distance).
We conclude this doctoral manuscript with a general discussion of our main findings and how they might contribute to the existing grief and psycho oncology literature. Finally, we discuss methodological issues with the limitations of our studies, future research and clinical implications.