Fostering well-being in parents of preterm infants in a Neonatal Intensive Care Unit

Abstract

Preterm birth, defined as birth before 37 weeks gestation, is increasing worldwide. More preterm infants with ever lower birthweight are surviving due to the advances in technology. The impact of these advances in technology is that the number of infants requiring specialist care in a Neonatal Intensive Care Unit (NICU) is rising every year. Therefore, the lives of an ever-growing number of infants and families are shaped by the NICU environment, an environment which is highly technical and medically focused. In addition, hospitalisation in an NICU places great financial costs on the health care system as a whole and on the parents themselves. With most preterm births the experiences of parents begin with complications before birth to eventual NICU admission. Relating to the NICU specifically, certain factors can be considered as protective to parental well-being or risk to parental well-being. The protective- and risk factors found in this study can be grouped into five broad categories, namely: the context of the NICU; relationships; the preterm infant; parental needs relating to information, education and communication; and lastly matters pertaining specifically to the mother. Within these five broad groupings protective factors include routine cleaning procedures, nursing support, other mothers in the unit, spousal support and extended family support, positive health of the preterm infant, KMC (Kangaroo Mother Care), education provision and for some mothers, staying at the hospital. Risk factors within the previously mentioned broad groupings include: the ‘alien’ environment of the NICU; sense of confinement; procedures; appearance and unstable health of the preterm infant; changed parental role; insensitivity of nursing staff and lack of support; extended family distress; lack of information and a juggling act to attend to responsibilities at home and at the hospital. In the last phase, coming home with the infant was influenced by various stressors, namely, having limited knowledge of care-taking of a preterm infant, confinement to the home, maternal depression, feeding difficulties, daily challenges, peculiarities of the infant’s behaviour and misunderstanding by others. General themes which appeared in more than one phase of preterm birth from before birth to going home with the infant, related to bonding and fear of the death of the infant, which may result in changes to the self as well as the experience of guilt and trauma. The veteran parents (parents who had previously had infants in an NICU) stated that support is necessary. Factors related to this support that were mentioned by the veteran parents include who should offer support, when to offer support as well as the content of support. The aim of this study was to develop a support intervention. The support intervention was aimed at fostering well-being in parents who have delivered a preterm infant who is admitted to an NICU. The aim was achieved by formulating five research questions and following five objectives. The main research question involved determining what aspects should be included in a support intervention to foster well-being in parents. Sub-questions were formulated as part of the process of answering the main research question. This research study followed the Design and Development (D&D) intervention research model of five phases namely, problem analysis and project planning, information gathering and synthesis, design of an intervention programme, pilot testing, and evaluation. The last phase of the intervention research framework followed in this study was excluded but a plan for dissemination was discussed in the final chapter. Elements of well-being as proposed by a number of authors were discussed as well as the theories of fostering well-being and how to recognise well-being. For this study, well-being has been defined as consisting of comprehensibility, positive relationships, engagement, manageability, accomplishment, positive emotions, self-acceptance and meaning. This forms part of both a hedonic and eudaimonic perspective. In addition to defining well-being, the bioecological theory of Bronfenbrenner and Morris (2006) is discussed as human development, including well-being, takes place within a social context. The support intervention proceeded through an initial phase, a change-oriented phase and a termination phase. An individualised family-centred developmental care approach; a salutogenic and fortigenic approach; a solution-focused approach; and an approach developing the theory of flow were used. The initial phase rendered useful information on the time leading up to NICU admission. Parents, particularly mothers, experience fear, anxiety, stress, and uncertainty when complications occur in the pregnancy. The preterm birth is unexpected and traumatic. The change-oriented phase differed in the quantity of contact sessions with each parent group due to individualisation and practical aspects such as the parent’s availability. During the follow-up semi-structured interviews, the parents mentioned that overall the support process was useful and helpful. Unfortunately, the termination phase was not completed fully, nor with all of the parents as the majority was discharged very quickly. Thus, the post-test was completed with many parents after they had returned home with their infant. Understandably, post-test scores did not show an improvement in overall stress and anxiety, as parents had entered a new stressor situation at home. It was not expected that significant results would be seen while the parents were still in a state of crisis in the weeks after the preterm birth of their infant however, stress and anxiety lessened with regard to certain factors and varied according to each set of parents. Discussing the parental reactions to the support intervention, it was seen that elements of well-being were starting to become evident. Recommendations were made with regard to each phase from before birth to home and later development as well as with regards to education and further research.