Lived Experience of Caregivers of Family-Centered Care in the Neonatal Intensive Care Unit: “Evocation of Being at Home

Background: In recent decades, family-centered care (FCC) has come to be known, accepted, and reported as the best care strategy for admitted children and their families. However, in spite of the increasing application of this approach, the experiences of the caregivers have not yet been studied. Objectives: The present study aimed at the description and interpretation of the FCC experience in two neonatal intensive care units (NICU) at Shiraz University of Medical Sciences. Methods: This study was conducted through the hermeneutic phenomenological approach. Semi-structured interviews were conducted with 17 professional and familial caregivers, and their interactions were observed in three work shifts. The interviews were audiotaped and transcribed verbatim. After observations, field notes were also written. Finally, the data were analyzed through van Manen’s methodology. Results: One of the essential themes that emerged in this study was the “evocation of being at home” among familial and even professional caregivers. This theme had three subthemes: i.e., “meta-family interaction,” “comprehensive support,” and “reconstruction of a normal family.” Accordingly, FCC eliminated borders between professional and non-professional caregivers and built close relationships among them in the NICU. It also provided for the needs of neonates, their families, and even professional caregivers through perceived and received support. Conclusions: Parents of the neonates admitted to the NICU experience hard moments. They not only play the role of primary caregivers, but they also receive the care. Focusing on the different meanings of this care from the caregivers’ points of view and having managers provide certain requirements can guarantee the establishment of comprehensive care for clients and proper support for the staff in this uni

Conditions for parents' participation in the care of their child in neonatal intensive care – a field study

<p>Abstract</p> <p>Background</p> <p>To promote participation by parents in the care of their child in neonatal intensive care units (NICU), health professionals need better understanding of what facilitates and what obstructs participation. The aim was to elucidate conditions for parents' participation in the care of their child in NICUs.</p> <p>Methods</p> <p>A field study with a hermeneutic lifeworld approach was used and data were collected at two NICUs through participative observations and interviews with representatives of management, staff and parents.</p> <p>Results</p> <p>The results point to a number of contradictions in the way parents were offered the opportunity to participate in neonatal intensive care. Management and staff both had good ambitions to develop ideal care that promoted parent participation. However, the care including the conditions for parental participation was driven by the terms of the staff, routines focusing on the medical-technical care and environment, and budgetary constraints.</p> <p>Conclusion</p> <p>The result shows that tangible strategies need to be developed in NICUs aimed at optimising conditions for parents to be present and involved in the care of their child.</p

Using focused ethnography in paediatric settings to explore professionals' and parents' attitudes towards expertise in managing chronic kidney disease stage 3-5

© 2014 Nightingale et al.; licensee BioMed Central Ltd. Background: Interactions between parents and healthcare professionals are essential when parents of children with chronic conditions are learning to share expertise about clinical care, but limited evidence exists on how they actually interact. This paper discusses the use of focused ethnography in paediatric settings as an effective means of exploring attitudes towards expertise. Methods: The paper draws on repeated observations, interviews and field-notes involving the parents of six children with chronic kidney disease, and 28 healthcare professionals at two, tertiary, children's hospital-based units. Data were analysed using the Framework approach and the concepts of expertise and self-management. Results: Our study highlighted rewards and challenges associated with focused ethnography in this context. Rewards included the ability to gain a richer understanding of the complex phenomena of mutual acknowledgement of expertise that occurs during parent/ healthcare professional interactions. Challenges related to gaining informed consent and ensuring potential participants had an adequate understanding of the purpose of the study. Two dimensions of parental expertise around their child (personal and clinical) were evident in our data. Parents' and professionals' expertise about the child and their condition was acknowledged and exchanged as parents learnt to share clinical-care with the multi-disciplinary team. Healthcare professionals acknowledged parents' need to understand aspects of each of the eight disciplinary knowledge bases relating to their child' s management and recognised parents' expert knowledge of their child, found ways to mobilise this knowledge, and wove parents' expertise into the management plan. Parents spoke of the degree to which their own expert knowledge of their child complemented healthcare professionals' clinical knowledge. However, ambivalence around expertise was evident as both parents and healthcare professionals questioned what the expertise was, and who the expert was. Our discussion focuses on the ways healthcare professionals and parents share expertise around the child's condition as parents take on responsibility for home-based clinical care. Conclusions: Our findings point to focused ethnography being an effective way of capturing new insights into parent and professional interactions in a paediatric setting and mutual acknowledgement of expertise; these insights may help redress the reported limitations of previous, retrospective studies

Föräldrars delaktighet i sitt barns vård vid neonatal intensivvård

When a newborn baby is in need of care in a neonatal intensive care unit (NICU), the care is assumed to be carried out not only by personnel but also by parents. To promote parental participation in this care, the parents are welcome to stay with their child whenever they wish. This thesis includes four papers and has the overall aim of contributing to the understanding of the significance of parental participation in the care of their child on the NICU, as well as the factors that influence, facilitate or obstruct that participation. The thesis is based on participative observations and interviews with parents and personnel at two NICUs. Paper I used a phenomenological hermeneutic lifeworld approach, while Papers II and III used a hermeneutic lifeworld approach, and Paper IV had a descriptive quantitative design. The results of this thesis show a general feeling of exclusion, with the mother experiencing a lack of interaction with the personnel and a sense of not belonging on the NICU. This has a negative impact on her maternal identity. However, when a continuous dialogue existed, and the mother was cared for as a unique person with unique needs, she experienced that she was participating, and this strengthened her maternal identity (I). The personnel on the NICU were ambivalent regarding the presence of parents, and set limits that included dictating conditions for parental participation. In the encounter with the parents they had difficulties in meeting worried parents and sometimes manifested an evasive attitude (II). Although the personnel had good ideals and intended to encourage parental participation, the care, including the terms of parental participation, was determined by the conditions set by the personnel, routines focusing on the care environment and medical technology, and budgetary constraints (III). The nature and extent of parental presence on the NICUs varied depending on the types of accommodations parents were offered. Those who stayed in parent rooms on the units showed more of presence with their children than did parents who stayed at a family hotel, at home or on the maternity ward. The main reason parents had for being with their child was a wish to take parental responsibility. Good treatment by the personnel was the primary factor facilitating parental presence, while parental ill health was the primary obstructing factor (IV). The results show a need to develop a family-friendly environment and tangible strategies to provide optimal conditions for enabling parents to be present and involved in the care of their child on a NICU. In addition, the personnel must be given the resources needed to make this possible