A number of potential stressors to which family members of patients in a neonatal intensive care unit (NICU) may be exposed have been identified in the literature. The complexity of the physical environment of a NICU, the infant’s physical appearance and behaviour, staff and parent interaction and adjustments in the parents’ role have specifically been noted to be potentially stressful for parents with infants in a NICU (Trombini et al. 2008). In addition, the distress that these parents experience has been noted to influence their parenting behaviour (Lefkowitz, Baxt & Evans 2010) and can affect the long-term relationship with their children and their ability to take care of them (Carter et al. 2007).

In Rwanda there is only one hospital with a NICU where newborn babies with health problems are cared for. In the Rwandan culture, when a baby is born, everyone in the family is excited and ready to receive the newborn baby at home. The very first ‘official’ social function in the family to recognise the homecoming of the infant is the naming ceremony, commonly known as Kurya ubunnyano, which is held on the eighth day after the birth of a child (Nsanzimana 2012). In the event that the baby is admitted to a NICU, the routine ceremonies are not held and all family members may become demoralised and worried about the health of the infant.

A variety of factors, including personality, mental health, family, as well as social and pregnancy-related events are likely to contribute to the type and magnitude of stress that parents of an ill neonate experience. These factors have been noted to contribute to parental stress such as family functioning, socio-economic status, parent perceptions of infant illness, high trait anxiety, and available sources of support (Busse et al. 2013; Holditch-Davis & Miles 2000; Singer et al. 2010). Furthermore, the length of stay of the infant in a NICU is thought to have an effect on parental stress and it has been demonstrated that the longer the baby is hospitalised, the higher the level of stress, specifically for fathers, with regard to their communication with the staff (Harvey 2010). In Rwanda, the researcher’s own experience indicates that parents with infants in a NICU are challenged by the policies and regulations in respect of family access to their babies and Hurst (2004) emphasises the need for parents to have access to their babies. Restricting visiting hours reduces the ability to assume the parental role and creates a separation between the infant and parents (Bruns & Klein 2005). It is recognised that poor staff-family interaction does not only influence the baby’s care negatively, but may also be a source of distress and discontent for the parents (Orzalesi & Aite 2011).

Having a newborn infant hospitalised in a NICU is an unexpected and stressful event for the family (Busse et al. 2013). The NICU is a specialised area that provides medical treatment and nursing care either for infants born prematurely, or for seriously ill newborn infants. Under normal circumstances the process of parent-infant bonding occurs within the first few days after birth and creates the basis for a lifelong relationship between the parents and their offspring (Gooding et al. 2011). Parent-infant bonding can be affected when the baby is born prematurely or experiences health risk, which necessitates admission to a NICU. The admission of a newborn baby to a NICU in conjunction with other stressors of being in ICU could cause substantial stress for the parents. Reducing parental stress and anxiety during the infants’ hospitalisation in a NICU should be a key nursing support function to enhance parental skills in challenging situations.

Although cross-cultural studies that investigate parental responses to their child’s hospitalisation have been conducted (Krulik et al. 1999; Lau et al. 2007), parental perception of stress in a NICU in the Rwandan context lacks investigation.

The aim of this study was to describe and analyse parental perception of stress that resulted from having their infants admitted to a NICU in Kigali, Rwanda. The Parental Neonatal Intensive Care Unit Stress Model (Wereszczak, Miles & Holditch-Davis 1997) was the conceptual framework chosen to guide this study.

The objectives of the study were:

Stress: Stress is defined as ‘psychological and physical strain or tension generated by physical, emotional, social, economic, or occupational circumstances, events, or experiences that are difficult to manage or endure’ (Colman 2003:711). In this study, stress refers to psychological and physical strain or tension experienced by a parent whose infant has been admitted to a NICU as measured by the Parental stress scale: Neonatal intensive care unit (PSS: NICU).

Stressor: A stressor is defined as physical, psychological or social force that puts real or perceived demands on the body, emotions, mind, or spirit of an individual (Colman 2003). In this study, a representative list of potential stressors refers to NICU sights and sounds, the way the baby appears and behaves, an adjustment in the parental role, and interaction with staff.

Identifying the stressors parents experience could assist health professionals in a NICU with planning suitable interventions that are more family centred. In nursing practice, the findings of this study will assist with raising health professionals’ awareness about parents’ stressors in a NICU in Rwanda; it will also assist them with providing the relevant support to the parents who have a child in a NICU. At educational institutions, it will assist educators in emphasising possible gaps in the current nursing curriculum that need to be addressed.

Newborn babies born prematurely or the ones who experience medical complications are admitted to NICUs. Hall (2005) explains that being a parent of a newborn baby in a NICU is like being in another world; it is very different from what the parents have known and experienced before. Sights and sounds of the unit, infant appearance, parent-infant relationship and/or parental role and staff communication are emphasised as NICU environmental stressors (Wereszczak et al. 1997). The literature review describes the stressors that parents experience in this situation and the factors that contribute to the situation.

The psychometric properties of the PSS:NICU were originally evaluated in the USA and Canada by Miles et al. (1993) and was further assessed in studies by Franck et al. (2005), and Reid and Bramwell (2003). Internal consistency was good with alpha coefficients of 0.70 for each subscale in the original PSS:NICU and internal consistency for the total instrument ranged from 0.94 to 0.89. Inter-scale correlations showed moderate to strong correlations between the subscales and between the subscales and the total scores. The construct validity of the PSS:NICU was measured and found significant by comparing the scale scores with the scores of the state anxiety scale of State-Trait Anxiety Inventory (STAI) (Spielberger et al. 1983).

To ensure the validity and reliability of the PSS:NICU for use with Rwandan parents, a pilot study with four parents of infants admitted to a NICU had been conducted. The pilot study was carried out one week before the final study. The gaps revealed by results of that pilot study included misunderstood terms that respondents interpreted differently and unclear statements that would not generate required information accurately. These editing issues were addressed by the researcher by ensuring that the meaning of the language used was clear.

After obtaining permission to conduct the research from the Kigali Health Institute and the hospital administration, an appointment was made with the NICU manager. The parents were approached when they came to visit their children. Eligible parents were informed about the purpose of the study and asked to sign informed consent forms before they were allowed to participate in the study. All those parents who gave consent were asked to complete the questionnaires when it was convenient for them. The researcher collected the completed questionnaires on the day of the parents’ visit to the NICU. Data were entered into a secure Statistical Package for the Social Sciences (SPSS) database.

All data were analysed using the SPSS version 16.0 and 21 computer program. Missing or incomplete data were excluded from the analysis. The data were arranged into subgroups of items that allowed a more meaningful examination of different dimensions. Descriptive statistics were used and results were expressed in the format of absolute numbers and percentages for nominal level data, and in mean values and standard deviations for continuous variables.

The PSS:NICU instrument can be scored either by calculating the frequencies of stressful experiences or by calculating two total scores. Metric 1: Stress occurrence level measures the level of stress produced when a situation occurs (in this study, only cases of parents who reported a stressful situation). Metric 2: Overall stress level measures the general stress from the environment (in this study, all cases whether exposed to a stressful situation or not) (Miles & Funk 1987). Metric 2 is used to describe the levels of stress parents have experienced whilst having an infant in a NICU. When the focus is on the NICU environment, Metric 1 (Stress occurrence level) is more useful to obtain a better understanding of the amount of stress each aspect of the environment causes (Miles & Funk 1987).

Scale scores were calculated by averaging those stress responses for the items on each scale and for the total scale. Independent samples obtained through the Kruskall Wallis and Mann Whitney U tests were used to examine the association between the characteristics of the parents and infants and the three general stress constructs of the PSS:NICU instrument, that is, infant appearance and behaviour, sights and sounds in the NICU, and adjustment in parental role.

There were 110 parents approached for the study with 98 responding. Of the parents who responded, 24 were fathers and 74 were mothers. Twelve potential respondents chose not to participate, citing time constraints as the reason for declining the invitation to participate.

Ethical approval was obtained from the Kigali Health Institute administration after approval by the appropriate institutional review board. Permission had also been obtained from the hospital where the study was conducted. To protect those vulnerable respondents, the researcher carefully observed each family member she approached to ensure each one of them was not stressed by completing the questionnaire; as a precautionary measure, psychological support was available. The parents were approached when they came to visit their children and eligible parents were informed about the purpose of the study and written consent was obtained prior to participation in the study. Parents were assured that their participation was voluntary, data could not be traced back to them, they could withdraw from the study at any time, and their refusal to participate would in no way affect the care that their child was receiving. All those parents who gave consent were asked to complete the questionnaires as and when it was convenient to them. The researcher collected the completed questionnaires on the day that the parents visited their children.

Three components of the results will be discussed.

The sources of stress for parents with an infant admitted to a NICU have been explained and it is important for health professionals who practise in a NICU to be aware of these sources of stress in an attempt to reduce them where possible.

In-service education for nurses and doctors who work in a NICU can be implemented and the educational curriculum of nurses and doctors should also be interrogated in respect of these issues. In future studies, it may be appropriate to validate the usefulness of these components for Rwandan parents and further research, using a qualitative approach that could provide more detailed information about parental stress.

Generalisation of the current study findings is limited because data were collected from parents at one hospital and in one geographical location. In addition, the sample of this study was not representative of the entire population because of the nature of convenience sampling. Although self-report questionnaires are a valuable method in psychological research, sole reliance on such questionnaires is a limitation, as the potential for subjective bias exists; for example social desirability refers to the tendency of individuals to present themselves in a positive light according to social norms and values (Colman 2003).

The results of this study provide important information for health professionals who are working at the NICU in Rwanda. This information can be used to look at ways to reduce stress and mitigate adjustment and coping with regard to this stressful situation. This objective may be achieved by preparing and educating parents about their infants’ tests, treatment, and general health condition. They should also be made part of the decision making about their infants. Priority should be given to train NICU staff with the aim of preparing and supporting parents in terms of the sights and sounds in a NICU. Policies that reduce parental separation from their infants would address a significant cause of stress for parents. All these strategies will assist with preventing or reducing stress for parents when their infants are admitted to a NICU