Measurement of Family-centered care perception and parental stress in a neonatal unit 1

ABSTRACT Objective: to evaluate the effects of the implementation of the Patient and Family-Centered Care Model on parents and healthcare perceptions and parental stress. Method: a quasi-experimental study developed in a neonatal unit of a university hospital in the municipality of São Paulo, Brazil, with the implementation of this model of care. Data collection were performed by two sample groups, one using non-equivalent groups of parents, and another using equivalent groups of healthcare professionals. The instruments Perceptions of Family-Centered Care-Parent Brazilian Version, Perceptions of Family-Centered Care-Staff Brazilian Version and Parental Stress Scale: Neonatal Intensive Care Unit, were applied to 132 parents of newborns hospitalized and to 57 professionals. Results: there was a statistically significant improvement in the perceptions of the parents in most items assessed (p ≤0,05) and for the staff in relation to the family welcome in the neonatal unit (p = 0.041) and to the comprehension of the family's experience with the infant´s hospitalization (p = 0,050). There was a reduction in the average scores of parental stress, with a greater decrease in the Alteration in Parental Role from 4,2 to 3,8 (p = 0,048). Conclusion: the interventions improved the perceptions of parents and healthcare team related to patient and family-centered care and contributed to reducing parental stress.


Introduction
In recent decades, authors have been widely discussing the importance of family participation in patient care, showing the need to caring for the family in the context of hospitalization, with health team support, based on a model of care that may bring physical and emotional benefits for both (1)(2) .
The Patient and Family-Centered Care (PFCC) Model has been proposed as an innovative approach to the planning, provision and health evaluation, conducted mutually by the partnership between health care providers, patients and families. It can be applied to patients of all ages and practiced in any health facility (2)(3) .
In the neonatal context, studies show that the PFCC is becoming the standard of care in the world, where the family is understood as a primary source of strength and support of the newborn (4)(5) . This perspective of care incorporates concepts such as unrestricted access to the child, respect, information, choice, service flexibility, autonomy of the involved subjects, cooperation and support at all levels of service provision (5) .
The benefits that have been demonstrated on the PFCC refer to the improvement of health and wellbeing of the newborn and his family, that translate into: greater satisfaction (6) , efficiency, access and communication (7) ; decreased newborn's hospital stay and readmissions (8) ; reducing parental stress and increase the self-confidence of parents after discharge (9) ; greater adherence to "kangaroo" care and developmental care (10) ; strengthening the bond between newborn and family, increased breastfeeding rate with better mental health outcomes in the long term and greater satisfaction of the health team in the care (4) . However, these benefits do not show strong evidence for recommendations, justifying the need for clinical studies.
In Brazilian neonatal units there is a constant demand of the parents to participate in the care of their children, combined with relational difficulties faced in interactions with the multidisciplinary team, revealing that the PFCC philosophy is still not a reality in most of these contexts (11) .
Fostering organizational cultural change requires reframing of beliefs, values and attitudes of the involved professionals (12) . This is a slower process in critical care environments, because many professionals who work in this context are attracted by hard technology (understood as devices), and the service dynamics is focused on the disease and not on the soft technology of relationships (3) .
Thus it is necessary that professionals broaden their focus of care, from an approach focused on illness to one that includes family, covering the essential elements of the PFCC; changing attitudes, beliefs and professional values that restrict access and participation of the family in this environment, acknowledging for the vulnerability and suffering of the family, as well as its potential and its central and permanent role in the child's life (2,5) .

Methods
This is a quasi-experimental study with two sample groups, one using non-equivalent groups of parents, and another using equivalent groups of healthcare professionals to evaluate the effects of the implementation of PFCC Model.
The study was performed at a neonatal unit of a university hospital in the municipality of Sao Paulo. This unit is a reference center for the care of high risk and malformed newborns and has specialized professionals and technology to meet the needs of this specific population.

Data collection
For assessing the effect of the intervention, the perception of the family and staff about the PFCC and the level of parental stress, were defined as study variables.
The perception of the PFCC was evaluated through the application of two measuring instruments, called Perceptions of Family Centered Care -Parents (PFCC-P),
The level of parental stress was measured by the Parental Stress Scale: Neonatal Intensive Care Unit (PSS: NICU) adapted to the Brazilian Portuguese (16) , consisting of 26 items divided into three subscales "sounds and sights", "baby looks and behaves" and "alteration in parental role". Parents pointed on a Likert scale with scores between 1 and 5, in which point they experienced stress in the scale items. The score "1" refers not at all stressful, "2" a little stressful, "3" moderately stressful, "4" very stressful and "5" extremely stressful (16) .

Data analysis
The analysis of categorical variables was performed using absolute frequencies (n) and relative frequencies

Results
Parents have similar characteristics in the preintervention and post-intervention, as shown in Table 1.
It is noteworthy the predominance of the female gender  As for the professionals, most are female, mainly physician and nurses, both with specialties, in the age groups between 31 and 45 years and median working time with newborns of 7 years (Table 2). The total number of newborns whose parents       Studies (18)(19)(20)(21)(22) related to family-centered care show that nurses have knowledge about the assumptions underlying this model of care, but also state that this knowledge is not yet fully incorporated into their practice (18)(19)(20) ; that there are still difficulties in its implementation, such as scarce interprofessional collaboration, lack of continuing education programs addressing this issue (21) and structural barriers in the health system for collaborative practice between parents and professionals, as recommended by the PCCF (22) .
Although there was an improvement of 30% in the perception of the health team professionals regarding the PCCF, the team still perceives a resistance for the presence of others than parents, grandparents and siblings. Resistances are not calculated or strategically planned, they are simply defensive reactions that may become other forms of beliefs (21) . level of parents in the post-intervention period (24) ; reducing maternal anxiety, through a collaborative care (25) ; increased satisfaction of mothers with the care provided, and exacerbated parental feelings of wellbeing and increases parental ability to care for their babies (4,25) .
The results of this study reflect an initial assessment in the short term, in which the parents show more positive answers than the team, which may indicate that this care philosophy is being incorporated gradually, suggesting that the team needs a process of continuing education, in order to occur a strong change in the culture of these professionals.

Conclusion
In this study it was found that there was significant