1. The Pedagogy of supporting antenatal consultation conversation with technology
Antenatal consultation is a core activity of the various health practitioners involved in the care of expectant mothers and medically complex newborns. During these consultations, practitioners are often forced to deliver large amounts of complicated information in a time of urgency. More so, moral and psychosocial issues may further complicate these consultative discussions. This is particularly true for those predicaments where issues such as prematurity, congenital anomalies, and fetal compromise are anticipated or encountered. Existing research supports that consultations need to be situated in a caring relation that culminates in a genuine conversation between practitioner and parent. In such conversational relations, a practitioner tends to be sensitive to the ethical particularities of a situation so that he or she can elicit and respond to a parent’s concerns. The purpose of this study is to develop an Apple iPadTM software application that can support practitioners as they engage in antenatal consultation. The study will use a novel design combining empirical qualitative research methods (focus groups, interviews, observation, content thematic analysis, and phenomenological thematic analysis) with interactive design. We anticipate that the developed application will improve informed consent practices, reduce parental stress, and facilitate the development of care plans. By improving and amplifying parental capabilities, greater parental presence in the neonatal intensive care unit may be fostered, leading to enhanced parent-infant bonding and wellbeing.
2. The Pedagogy of understanding young and adolescent children's experiences of living with a ventricular assist device
A ventricular assist device (VAD) is a mechanical pump used to support the functioning of a failing heart. As a pediatric therapy, a VAD is used as a temporary solution for poor heart function, a bridge to transplantation, or as a final destination therapy for non-transplant candidates. Little knowledge and information exists, however, that can assist clinicians and other caregivers in developing an appreciation and the practical know-how necessary to meet the challenges and grasp the significance of the experiences of young and adolescent children who require VAD support. The aims of the proposed study are: (1) to identify life-skill and emotional issues that school-aged children face who live with VADs; and (2) to develop an action-sensitive understanding of how these children may actually experience living with VADs and how to deal with issues that arise in everyday life contexts. These research aims will be pursued by means of two research methodologies, content-analysis and phenomenology. The qualitative data material that forms the empirical source of this study will be gathered from children living with VADs and from their caregivers. This study will help to identify difficulties, trials, and challenges children face living with VADs so that these insights may inform the knowledge in action of healthcare practitioners, and those who care for these children. Insights gained from this study should also support clinicians and other caregivers in their desire to become more attuned to the experiences of young and adolescent children who live with VADs.
3. The Pedagogy of relational ethics of the parental experience of congenital anomaly in the NICU
Some babies' births are complicated by prematurity or other medical problems, prompting admission to a newborn intensive care unit. A number of these children are born with congenital anomalies. Certain anomalies may be identified during pregnancy, and others are not recognized until after birth. While some anomalies may not appear outwardly visible, others occur along with striking changes in the physical appearance of a child. To parents, this appearance may be unexpected and distressing. Parents may experience an ambiguous rational-emotional and bodily encounter with a child who appears so "other" than they are—different from their body, yet also so clearly from their body. There is a dearth of research that addresses this natality experience from the perspective of the parent in spite of the fact that this relational encounter may profoundly shape present and future parent-child interactions and moral-emotional decision-making. The aim of the proposed study is to develop a phenomenological understanding of the parental experience of the birth of a child with a visible congenital anomaly who requires hospital care in a newborn intensive care unit. This study will use a qualitative phenomenological methodology to empirically explore a variety of such parental experiences. The final research texts and knowledge translation media will facilitate lay and professional practitioners to respond to the moral and emotional distress of the parents of these NICU babies. This study aims to assist the healthcare provider to become pedagogically prepared to deal with the contingencies of the experiences of parents who are faced with the birth of a child with a visible congenital anomaly. Practically and professionally, this knowledge is critical to the reflective ethical medical practice of the various health discipline practitioners responsible for the infant patient and family.