Preterm Birth – A Qualitative Interview Based Study about the Experiences of Parents
There is hardly any other medical specialty where the limits of what is considered to be medically possible but also ethically preferable is changing as quickly as in neonatology. When a child is born preterm in this rapidly fluctuating environment that is so highly medically engineered, many parents describe this situation as a liminal experience because of the intensity and gravity of the situation: As parents, they have custody and, therefore, they have to make decisions concerning the child’s health under major prognostic uncertainties. Most of these decisions touch the border of viability as formerly distinct limits have been constantly stretched and blurred through medical progress. The statistics and data that usually provide some comfort in times of evidence-based medicine do not represent a safe basis of decision-making in neonatology: In clinical studies, the number of medical cases is constitutionally small and the particular case history is often too individual to be easily and safely classified. Additionally, in most cases, it is hard to properly judge the extent of a child’s impairment before the age of six or seven. Furthermore the clinical practice in neonatology could drastically change within a period of six or seven years, so that by the time the research results are published, the guidance they provide is very limited.
My research project will explore the liminal experiences of parents, whose preterm born children spent the first weeks of their lives in a neonatal intensive care setting. The parents’ narrations in these qualitative interviews will provide extensive and complex insights into their liminal experiences. The interviews will be conducted with parents of children of three different age groups: parents of a one to two-year-old, parents of a six-to-seven-year-old and parents of a child, who was born in the eighties and who is already a young adult. Based on this selection, the three most important thresholds of the maturation process of a child born preterm are covered. By the time children turn one year old most of them have spent a large amount of time at home. After the long and exhausting hospital stay, an everyday family life may be established. Until school age, there is a great dynamic in the physical and mental development that all prognoses concerning the child’s development are accompanied by major uncertainties. The child could catch up on an existing developmental delay or a delay such as an adjustment disorder or a dyscalculia could be discovered in later childhood. At the age of six or seven, the development of a child is more properly assessable and foreseeable. The last age group was selected for two reasons: On the one hand, early adulthood is the time when most children progressively get independent and start to detach themselves from their parents. This time may especially allow parents to reflect upon their relationship with their children and the time they have spent together. On the other hand, neonatal practice was entirely different in the 1980s compared to today’s options for medical treatment. Keywords are surfactant and the involvement of parents in an intensive care setting.
Based on eligibility criteria of the interviewees, the preterm birth of the child as well as their hospital stay are not recent events. Choosing narrative interviews is thus especially suitable for understanding how these parents integrated this liminal experience into their autobiographical narration. Various coping processes as well as individual abilities to deal with such an event might have left traces in these narrations.
All of the children who are included in my interview study have impairments due to their preterm birth. I hypothesize that in these cases, which are also statistically the most likely ones, the event of the preterm birth affects the parents more significantly, making it harder for them to cope with the preterm birth. Therefore, these parents might constitute the most interesting group in terms of the research interest of my study.
The analyses of these qualitative interviews will focus on the narrability of the event as well as the epistemic meeting place. It will be explored about what kind of experiences the parents can speak, which are narrable and about which they cannot narrate. It will be discussed what kind of influencing factors helped to narrate an event more easily and to what extent the context of narrating is shaping the narrability of an event. In order to cope with preterm birth it might be necessary for the parents to renarrate this liminal experience with the help of ones personal surroundings and friends until the life story can be told as coherent. The process of co-narration might be impaired, if there is no epistemic meeting point. Words and expressions are limited in a language and problems of communication are predetermined, when it is hard to find a common language with shared experssions. To put it in an everyday example, when parents of a term born baby speak of a ‘terrible night’ they might think of changing the diapers four times and caching to little sleep, when parents of a preterm born baby speak of a ‘terrible night’ they might think of many breathing stops and even more false alarms, the lack of oxygen which might result in severe cognitive impairment and their own enormous fear and responsibility. Some parents may fall silent because they cannot make themselves understood, but so their stories cannot be integrated easily when the co- narrating help of a friend is missing. Furthermore the strengthening and the challenging factors of this period of time will be analysed.
With this new awareness of the parents’ experiences, the nurses and physicians involved can approach the parents in a more sensitive and supportive way. Misunderstandings and discrepancies can be avoided through more sensitive communication with the parents at the neonatal intensive care unit. In addition, through the results of my research, I hope that the parents’ coping processes and coping strategies can be supported more expediently not only by caretakers in neonatology but also in follow-up care.
Author: Miriam Halstein