Mariana Amorim

Parenting roles and knowledge in neonatal intensive care units: protocol of a mixed methods study

Introduction There is a strong focus on the translation of scientific knowledge into evidence-based practice when dealing with very preterm births. The aim is to standardise and rationalise healthcare. The incorporation of parents’ perspectives with respect to the organisation of care and technical interventions in neonatal intensive care units (NICUs) is needed. This study aims to analyse the repertoire of meanings, knowledge and emotions actualised by the parents of very preterm infants hospitalised in NICUs in the decision process regarding parental care, treatment options and uses of information sources. Methods and analysis This is a mixed-methods, observational study. The methodological strategy will rely on: (1) Ethnographic observation, carried out in a level III NICU located in the North of Portugal, during 6 months; (2) NICU-based surveys of mothers and fathers of very preterm infants born between July 2013 and June 2014 and admitted at the seven public level III NICUs of the Northern Health Region of Portugal; (3) Single and couple semistructured interviews to a subsample of mothers and fathers of very preterm infants, 4 months after birth. Inferential statistics will be used to analyse the quantitative data and content analysis, with an iterative and reflexive process and will be implemented to assess qualitative data. Ethics and dissemination The study protocol was approved by the National Data Protection Commission and the Ethics Committee of all the hospitals involved. The current project will contribute to develop resources for enriched good medical practices in the context of neonatal services through integrating insights from social sciences, public health, epidemiology and ethics. The expected dissemination actions are effective tools in designing strategies that aim to develop family-centred care and to improve medical practices in the context of neonatal services.

Factors Influencing Parent Reports of Facilitators and Barriers to Human Milk Supply in Neonatal Intensive Care Units

Background: Successful human milk supply in neonatal intensive care units (NICUs) requires the development of family-centered services. Objective: This study aimed to assess parent perceptions of factors that help or hinder providing human milk to very preterm infants (VPI) in the NICU according to sociodemographic, reproductive, and obstetric characteristics. Methods: This cross-sectional quantitative study included 120 mothers and 91 fathers of VPI hospitalized in a level 3 NICU located in the Northern Health Region of Portugal (July 2013-June 2014). Interviewers administered structured questionnaires regarding parent characteristics and the provision and perception of factors that help or hinder human milk supply in the NICU, 15 to 22 days after birth. Results: The main facilitators of human milk supply were its contribution to infant growth and well-being (51.4%) and parents’ knowledge of breastfeeding benefits (27.6%). The main barriers were worries related to inadequate milk supply (35.7%), difficulties with expressing breast milk (24.8%), and physical separation from infants (24.3%). Fathers referred less frequently to the contribution of human milk to infant growth and well-being (odds ratio [OR] = 0.57; 95% confidence interval [CI], 0.32-1.00) but more frequently to knowledge of breastfeeding benefits as facilitators (OR = 2.31; 95% CI, 1.23-4.32). Participants with > 12 years of education (OR = 1.91; 95% CI, 1.05-3.47) and those with an extremely low birth weight infant (OR = 1.90; 95% CI, 1.02-3.54) highlighted worries related to inadequate milk supply. Fathers (OR = 2.16; 95% CI, 1.11-4.19) and participants with ≤ 12 years of education (OR = 0.25; 95% CI, 0.11-0.57) more frequently reported difficulties with expressing as the main barrier. Conclusion: The parent’s gender and education and the infant’s birth weight are crucial considerations for establishing optimal practices for supporting breastfeeding.

Quality of life among parents of preterm infants: a scoping review

PurposeTo synthesize the body of knowledge on the factors influencing the QoL of mothers and fathers of preterm infants.MethodsA scoping review was performed. Publications indexed in PubMed®, Web of Science™, CINAHL® and PsycINFO® were searched, targeting studies presenting original empirical data that examined parental perception on QoL after a preterm delivery. Eligibility and data extraction were conducted by two independent researchers. The main quantitative findings were synthesized and qualitative data were explored by content analysis.ResultsThe studies, 11 quantitative and 1 mixed methods, were derived mainly from the USA (n = 6). Heterogeneity across the studies was observed regarding the operationalization of QoL and the use of units of analysis (mothers, parents, families and caregivers). In a context where 40 out of 45 covariates were analysed by only one or two studies, results suggested that parental QoL after a preterm delivery is influenced by factors related with mother’s characteristics, family issues and health care environment rather than infants’ variables. Factors regarding fathers’ characteristics and structural levels were not addressed.ConclusionsStandardizing the operationalization of the QoL when analysing mothers and fathers of preterm infants calls for a structured questionnaire adapted to their specific needs. Further research should include both mothers and fathers, invest in mixed methods approaches and be performed in different countries and settings for allowing integration and comparison of findings.

Artigo originalA short form of the neonatal intensive care unit family needs inventoryVersão curta do inventário de necessidades da família na unidade de cuidados intensivos neonatais

Objective The identification of parental needs in Neonatal Intensive Care Units (NICU) is essential to design and implement family‐centered care. This article aims to validate the NICU Family Needs Inventory for the Portuguese population, and to propose a Short Form.

Necessidades e papéis parentais em cuidados intensivos neonatais: revisão dos guias portugueses

The scope of this article is to analyze the parental roles and needs included in Neonatal Intensive Care Unit guidelines. Thematic content analysis was conducted of 33 guidelines (28 consensuses and 5 documents directed to parents) freely available on the Portuguese Pediatrics Society website in August 2014. These documents deal mainly with information needs, child care activities performed by the parents and the respective responsibilities in decision making with respect to the health of children. Furthermore, parental and family characteristics were mentioned as risk factors for prematurity and perinatal diseases. The psychosocial consequences of parenthood experienced in Neonatal Intensive Care Units, as well as the adequacy of their environmental characteristics to parental needs, were less frequently touched upon. Issues related to the safety and comfort, confidence of parents in healthcare and social support were rarely touched upon. The results reflect sociocultural norms associated with intensive parenting, which is exclusively child centered, highly emotional and performed under the guidance of health professionals. The important aspect is to issue and disseminate guidelines that foster the integration of family-centered care in the dynamics of Neonatal Intensive Care Units.The scope of this article is to analyze the parental roles and needs included in Neonatal Intensive Care Unit guidelines. Thematic content analysis was conducted of 33 guidelines (28 consensuses and 5 documents directed to parents) freely available on the Portuguese Pediatrics Society website in August 2014. These documents deal mainly with information needs, child care activities performed by the parents and the respective responsibilities in decision making with respect to the health of children. Furthermore, parental and family characteristics were mentioned as risk factors for prematurity and perinatal diseases. The psychosocial consequences of parenthood experienced in Neonatal Intensive Care Units, as well as the adequacy of their environmental characteristics to parental needs, were less frequently touched upon. Issues related to the safety and comfort, confidence of parents in healthcare and social support were rarely touched upon. The results reflect sociocultural norms associated with intensive parenting, which is exclusively child centered, highly emotional and performed under the guidance of health professionals. The important aspect is to issue and disseminate guidelines that foster the integration of family-centered care in the dynamics of Neonatal Intensive Care Units.

Trajectories of health-related behaviours among parents of very preterm infants: from preconceptional to postnatal period

Background The birth of a very preterm infant constitutes an acute adverse life event that may condition changes in lifestyle patterns with a considerable impact on the health of mothers and fathers. This study aims to assess trajectories of health-related behaviours from preconceptional to postnatal period in parents of very preterm infants. Methods Between July 2013 and April 2014, parents of very preterm infants hospitalized in …

PB.12 A Short Form of the Neonatal Intensive Care Unit Family Needs Inventory

Objective To propose a Short Form of the Neonatal Intensive Care Unit (NICU) Family Needs Inventory, through a cross-cultural adaptation for the Portuguese population. Methods The NICU Family Needs Inventory is a self-report scale with 56 statements, ranging from not important to very important.1 A standard procedure for the linguistic adaptation was used. Instrument was administered to 40 mothers and 30 fathers of infants hospitalized in 5 level III NICU in the North of Portugal, 8 to 22 days after admission (January–June 2013). Items were dichotomized as very important or not very important. Exploratory factor analysis was performed to assess the dimensionality of the scale and Cronbach’s alpha to measure internal consistency. The global goodness of fit of the scale was evaluated using the comparative fit index (CFI). The number of items needed to achieve a reliability closed to 0.8 was calculated by the Spearman-Brow formula. Results Exploratory factor analysis revealed 2 dimensions, one focused on parents needs and other on baby needs, with a CFI of 0.97. To compose the Short Form Inventory, all the variables with a response variation ≤5% (n = 7) were eliminated and 14 items were selected in each dimension. Confirmatory analysis supported the existence of 2 dimensions, with a Cronbach’s alpha of 0.81 for the parents-centred needs and 0.78 for the baby-centred needs. Conclusion The Short Form of the NICU Family Needs Inventory is a valid instrument with a high degree of reliability. Further studies are needed to explore associations with practices of family-centred care. Reference Ward K. Perceived needs of parents of critically ill infants in a Neonatal Intensive Care Unit (NICU). Pediatric Nursing, 2001;27(3):281–288

PB.02 Needs and stress in parents of very preterm infants hospitalised in Neonatal Intensive Care Units: the effect of the data collection period

Objective To assess the effect of data collection period on the self-reported parental needs and stress among mothers and fathers of very preterm infants hospitalised in Neonatal Intensive Care Units (NICU). Methods Between January and September 2013, parents were interviewed 8 to 14 days or 15 to 22 days after admission, in a level III NICU in the North of Portugal. Data were collected through a self-administered questionnaire comprising the NICU Family Needs Inventory and the Parental Stress Scale in NICU. The present analysis included 24 pairs of mothers and fathers. Results An increase in the parental perception of comfort and support needs as very important was observed 15 to 22 days after admission, comparing to the perception assessed 8 to 14 days after admission (36.8% vs. 40.0%; 31.6% vs. 45.0%, respectively), while the appreciation of assurance (100% vs. 85.0%), proximity (94.7% vs. 85%) and information needs (84.2% vs. 75.0%) has decreased. Regarding parental stress, those interviewed 15 to 22 days after birth were more likely to consider the baby’s looks and behaviours (36.8% vs 55.0%), and changes in parental roles (68.4% vs 80.0%) as very or extremely stressful. However, an attenuation of the overall stress levels among parents interviewed 15 to 22 days after admission was observed. Conclusion In both moments of assessment, assurance and proximity were the most important parental needs. A longer hospitalisation period suggests a higher relevance of comfort and support needs, as well as an increase on the stress related with parental roles.