Building trust with families in neonatal intensive care units: nurses working in neonatal intensive care units must understand and respect parents' expectations and needs if they are to help families to trust and participate in the care their infants receive.

One of my favourite sayings, which I use when my son, daughter or husband has a cut, splinter or fever, is: "Trust me, I'm a qualified health professional". This is usually met with hoots of laughter and unkind comments about my abilities as a nurse. But amid the joking, the ailment is dealt with. The Level of trust my family has in me is most likely nothing to do with my being a nurse. However, in my rote as a cLinicaL co-ordinator in Dunedin Hospital's neonatal intensive care unit (NICU), being a nurse is the first point of reference families have about me when their infants require intensive care. The suggestion that parents should "trust me, I'm a qualified health professional" seems presumptuous. However, the public does see nurses as belonging to one of the most trustworthy occupations. (1) Establishing a trusting relationship is a key therapeutic intervention for nurses working with families of hospitalised children. (2) An exploration of the definition of trust, and specifically how parents come to trust (or not) nurses in NICU, helps to reveal the meaning of parent-nurse trust and how this affects nursing practice.

Defining 'trust'

A definition of trust is difficult to come by, Leading some authors to use frameworks or models to present trust as a construct of the experiences of the patient or family. One model developed in an attempt to understand the meaning of trust for NICU parents is the guarded Aalliance (GA) model. (3) This presents a three-stage development of trust and was originally developed through work with families of chronically ill patients. The framework was explored in relation to NICU and similarities to chronic illness were identified. These similarities included the prolonged nature of illness of the Low birth weight (LBW) infant; multiple encounters with multiple health care professionals in multiple settings over time; the unpredictable medical course of the LBW infant; fluctuation in acuity; and ongoing chronic health issues.

Links are made between the GA model and the model of family-centred care (FEC) that underpins care in many NICUs. (3)

The principle of FCC supports the development of a partnership between the family and staff where the parents develop confident relationships with staff and their infant. (4) This is congruent with the GA model that facilitates assessment and understanding of family stressors and relationship needs. The development of positive relationships benefits families during their time in NICU and for future health care interactions. (5) Trust is dynamic and the type of relationship parents engage in changes according to their need. (3) The family's involvement in care and decision-making must be done in a way that best meets their needs at the time. The use of models to describe trust provides insight into how experiences shape the meaning parents give to their health care experience, but the interpretation and categorisation of these experiences differs among authors, making the definition of trust elusive. A simple definition of trust is given in a study of families of patients in adult ICU: "Trust is the dependence on another person based on the congruence between the expected and actual behaviors of the trusted person." (2)

This definition has been developed, creating a three-trajectory description of trust in a study of families of hospitalised children, including the preterm infant. (2) If things are going smoothly, "general trust" exists. (2) In this trajectory, parents' expectations become clear as they are met. Nurses are trusted and the parents are pleased with the care their child receives. When expectations are exceeded, "global trust" ensues. (2) In this trajectory, parents have trust in nurses and the hospital as an organisation. Things are often going better than expected although parental expectations are still evolving. Parents "looked for the good" in the health care provided and found it.

When expectations are not met, "distrust" develops. (2) In this situation parents had developed expectations through their health care experience and these expectations were not met. Parents "Looked for the bad" and found it and there was anger in interactions.

Meeting the expectations and needs of a person is central to establishing and maintaining trust. From this it may be assumed that meeting the needs and expectations of the parents of an infant in NICU will nurture trust. This assumption is supported by literature describing congruence between the expectations of families of adult patients and the expectations of families of hospitalised children. (2)

Finding out the parents' expectations is central to understanding and meeting these expectations. Having an infant admitted to NICU is a crisis for the family, especially those of LBW infants. (6) The family is vulnerable and their reliance on the multi-disciplinary team's abilities often legitimises paternalism through minimising parental involvement and decision-making. (7) Historically, the physical needs of the infant were seen as central to care interventions. Family needs were regarded as secondary and related to the infant's care--treating the infant equated to treating the family. (3) Literature describes parents' needs and expectations as: the need for recognition and support of the parental role; the need for adequate information and communication; the expectation that staff will care; and the expectation that staff will demonstrate competence in their practice. (2,3,6,7,8,9,10) Exploring these four themes of parental expectations in relation to NICU creates a clearer understanding of parent/nurse trust.

Acknowledging the parental role

Historically, admission of an infant to was viewed in isolation from the family. (3) The introduction of FCC acknowledged the increasing involvement of families in the care of their infants. However, this change in philosophy or policy hasn't necessarily changed the nature of interactions and interventions to meet the needs of families. (4,6) The complexity of NICU care has led some carers to believe they need to protect as well as care for the infant, thus undermining family involvement and attachment. (4,6) Challenges that affect family functioning include the significant illness of the infant, parents being separated from each other and other family members, as well as separation from their infant, increased need for psychological support and increased economic concerns. The family is considered part of the care-giving team. However, meetings with parents are usually about attending to the needs of the infant, updating progress, treatment or the plan of care, as well as meeting the obligations of the health care system for informing the family. Parent needs should be explored and made implicit from the beginning--presence and participation does not equal assessment and fulfillment of family needs. (3) Parents need to participate in care to fulfill their parental role but only to the extent they fee[ comfortable. (2) Parental fear that their role would not be recognised or valued is a common theme (3,4,6,8,9) and parental expectations of their role are not clear in the event of an acute admission such as to NICU. An antenatal visit to NICU during a high-risk pregnancy presents an opportunity for nurses to establish some expectations of parents. The importance of acknowledging the parental role was identified in a study exploring the value of antenatal visits to NICU. (8) However this role was not adequately explained or emphasised.

Advice from parents for improving the value of antenatal visits to NICU is for more information about the alteration of the parental role. (8) Parenting is intimate but in NICU this is shared with, and scrutinised by, health care workers and other families. The principle of "parenting in public" sees parents describing parenting differently in hospital than at home. (11) Feelings of having their skills scrutinised by health care workers and others results in parents losing confidence. Parents must adapt to relating to their infant and to others around them. Anecdotally among NICU nurses, parental vigilance is construed as being founded in a lack of trust from parents. In families of adult patients, vigilance is part of distrust. (2) However, for parents of a hospitalised child, vigilance and lack of trust do not go together. Vigilance is more likely to be inherent in the parental role than an indication of mistrust. (2) Indeed, most parents report never leaving their child's side, despite trusting the staff. (2) However, space constraints and the lack of privacy in NICU often preclude parents from remaining in attendance. Nurses' attitudes rather than parental choice often dictate the level of parental involvement. (11) Nurses make value judgments about parents which influence the nurse's behaviour towards them. Early in the hospitalisation, NICU nurses need to find out what level of involvement parents expect and are prepared for, and this should be reviewed frequently.

Trust in nurses' expert care

Staff credentials and expertise are important to the parents of hospitalised children. (2) However, the families of adult patients are more likely to assume the clinical competence of staff and feel confident in the nurse's ability to provide the care needed. (2) Maternal stress is less when the nurse is perceived to be experienced, competent and knowledgeable. (4) Parents are trusting when they see what they believe to be expert care. (2)

Nurses' assessment of parental needs is often not the same as those identified by parents. Nurses' perception of the top-rated need of parents was to know how their child was being treated medically; however this was rated at number five by parents. The top-rated need for parents was to feel that staff cared about their child; however this was rated at number 10 by nurses. (2) Addressing this incongruence between nursing and parental perceptions is an important aspect of establishing trust. Another example of the misperception of nurses in NICU can be seen in a description of an antenatal tour of NICU where nurses show expectant parents the sickest or most preterm infant, or complex life-sustaining equipment without considering the relevance of these sights to the maternal-foetal condition. (8) Nurses need to be able to elicit information from parents about their expectations of an antenatal tour and develop a basis for supporting parental expectations when, or if, the infant is admitted.

Unequal power relationships

Nurse-patient relationships are identified as being of unequal power. (14) The presence of trust in this context raises concern about exploitation. Nurses are on familiar territory while parents are removed from theirs; nurses encounter stressors as a usual part of their practice while parents have new stressors related to hospitalisation; nurses don't necessarily have emotional anxieties for infants in NICU, while the parents have heightened anxieties; nurses are in a position to control information, while parents are dependent on others for information; and nurses' competence is a means to fulfilling their role while parental competence is not established in the nurse-parent relationship. (11)

The NICU experience is one where parents are not able to "shop around" for a health care provider, as perhaps they would for a GP or midwife. Nurses are the first point of contact in setting the context for parents and, as such, nurses need to support parents by skillfully recognising and enabling the parental role. Nurses need to develop self-awareness of their own emotions and how they express these emotions. (11,14) Trust changes with time and experiences, and family responses and actions change according to changes in trust. (3) Active listening helps nurses understand how each family forms relationships, and shapes interventions and support for the family or infant at any given time--the nurse must be "a curious listener, and a compassionate stranger". (9)

A family is more trusting when they feel the nurse connects with them. They feel accepted as people and perceive the nurse as a fellow human being--the child is recognised as a person, not just a patient or a diagnosis; the nurse shows concern about the well-being of the infant and family; the child is treated with dignity and called by his/her correct name; there is recognition of the parental role; and there is continuity of care. (2,3) Nursing involves an intimate connection between "caring for" and "caring about". (14) "Caring about" is differentiated by an attitude of concern and commitment and requires nurses' reflective inquiry of their own actions, motives and reactions.

Showing care for parents and infants

In a study of parental decision-making involving imperiled infants in NICU, parents didn't focus on ethics during decision-making; rather they focused on their relationships with and trust of the staff. (9) Health care workers demonstrating care were identified as trusted, and trust promoted confidence in information received and decisions made. Caring involved humility, with nurses presenting themselves as having limitations, of not being omnipotent. When parents perceive nurses as being more humane, they describe interactions such as caring about "normal baby stuff", promoting parents' physical contact with theft infant, or breaking "rules" such as visitor limits. These actions conveyed the message to parents that they were important to their infant and the nurses cared to the point of taking risks to support parents. (9)

Parents participating in an ante-natal tour of NICU during high-risk pregnancy stated the tour reassured them of the care theft infant would receive. (8) Parents reported witnessing the compassion and empathy of nurses caring for and about infants in NICU, but one questions where the compassion and empathy were when the nurse conducting the tour was showing expectant parents the sickest or most preterm infant. There is a common perception among parents that nurses providing them with emotional support will draw nurses away from the care of the infant. (4) To overcome this, nurses must establish early in the hospitalisation that "caring about" the baby includes "caring about" the parents.

Decision-making in NICU should inherently be made by parents and they rely on adequate information. (9) Parents describe feeling like passive observers in the decision-making process in NICU (9) and the medicalisation of decisionmaking often limits parental involvement. The underlying assumption that information exchange and communication have a significant impact on parents is supported by a study of parents of infants who had died in NICU. (9) Parents were asked about their perceptions of decision-making and described the need for repetitious information in simple, understandable terms. Parents who stated they did not receive this felt they had limited involvement in decision-making.

The study also revealed that parents did not describe a decision-making process, but rather the context of the process--where it took place, who was there, what was discussed. (9) Parents described how the treatment decision was implemented, including the support given to them through the experience of their infant's death. Parents reported that the experience of holding their infant, sometimes for the first time, highlighted for them the gravity of their infant's condition. However, holding their infant was also an intervention that enabled parents to move forward with decision-making. Parents need to trust health care workers in order to receive information and believe it. This depends on how well nurses can recognise parental knowledge, experience, need for information, and stressors. (2,11)

Developing and sustaining trust

Understanding and meeting parental needs is important in developing and sustaining trust. The medical model of care often dominates in NICU. This is a deficit model that focuses on illness and treatment. However, the use of a nursing framework, such as developmentally supportive FCC, focuses on recognising and building on the strengths of the family, by fostering trust to equip the family with the capacity to manage their infant's health care. (6) Work that involves dealing with other people's feelings is described as "emotional labour'. (10) Nurses work with qualitative concepts--trust, caring, emotional support--which are not only time-consuming and emotionally loaded, they often remain invisible to other members of the multi-disciplinary team. (10) Nurses' affinity to mothers in NICU has been described as the "single most important influence on the woman's experience of mothering". (4) In the highly technical environment of NICU, work that is not measurable disappears within the statistical analysis of outcomes and costs, further concealing, not only the work of nurses in the health care system, but the value of that work. My assumption that parents should "trust me, I'm a qualified health professional" because I'm a nurse is merely the starting point for developing a trusting relationship with parents in NICU. An awareness of one's own practice and assumptions is needed to understand parental needs. The skills neonatal nurses use in their practice are often intuitive, but are cognitive-based, and nurses must articulate the knowledge grounded in their practice. This exploration of trust reveals and further develops the knowledge-base of neonatal nursing practice, giving clarity to the meaning of trust and further understanding of the development of trust.

This article was reviewed by Kai Tiaki Nursing New Zealand's editorial review committee in May 2006.

References

(1) Otago Daily Times (2004) "Who do you trust?" 27/05/04. Dunedin: Allied Press

(2) Thompson, V. L., Hupcey, J. E. & Clark, M. B. (2003) The development of trust in parents of hospitalized children. Journal of the Society of Pediatric Nurses; 8: 4,137-147. Retrieved 20/05/05 from CINAHL database.

(3) McGrath, J. N. (2001) Building relationships with families in the NICU: Exploring the guarded alliance. Journal of Perinotol & Neonotal Nursing; 15: 3, 74-83.

(4) Fenwick, J., Barclay, L. & Schmeid, V. (2000) Interactions in neonatal nurseries: women's perceptions of nurses and nursing. Journal of Neonatal Nursing; 6: 6, 197-203.

(5) Hartrick, G., Lindsey, A. E. & Hills, M. (1994) Family nursing assessment: meeting the challenge of health promotion. Journal of Advanced Nursing; 20: 1, 85-91.

(6) McGrath, J. (2000) Developmentally supportive caregiving and technology in the NICU: isolation or merger of intervention strategies? Journal of Perinatal and Neonatal Nursing; 14: 3, 78-91.

(7) Beresford, 0. (1997) Family-centred care: fact or fiction? Journal of Neonatal Nursing; 3: 6, 8-11.

(8) Griffin, T., Kavanaugh, S., Soto, C. F. & White, M. (1997) Parental evaluation of a tour of the neonatal intensive care unit during a high risk pregnancy. JOGNN; 26: I, 59-65.

(9) Wocial, L. D. (2000) Life support decisions involving imperiled infants. Journal of Perinatal & Neonatal Nursing; 14: 2, 73-86.

(10) Greenall, F. M. (2001) Doctor nurse communication in the neonatal intensive care unit: an anthropological analysis. Journal of Neonatal Nursing; 7: 4, 110-114.

(11) Mulvay, B. (2001) Negotiating the roles of nurses and parents. Kai Tiaki Nursing New Zealand; 7: 10, 12-13.

(12) King, P. M. (1994) Health promotion: the emerging frontier in nursing. Journal of Advanced Nursing; 20, 209-218.

(13) Nursing Council of New Zealand (2002, amended) Competencies for Entry to the Register of Comprehensive Nurses. Wellington: Nursing Council of New Zealand.

(14) de Raeve, L. (2002) Trust and trustworthiness in nurse-patient relationships. Nursing Philosophy; 3, 152-162. Retrieved 20/05/05 from CINAHL database.

Juliet Manning, RN, PGCert (child and family health), is clinical co-ordinator of Dunedin Hospital's neonatal intensive care unit. This article is based on a postgraduate paper completed Last year, for which she received an NZNO study grant.