The neonatal intensive care unit environment: sources of stress for parents

Many aspects of neonatal intensive care units (NICUs) are stressful to parents, including prolonged hospitalization, alterations in parenting, exposure to a technical environment, and the appearance of their small, fragile infant. To identify potential NICU stressors for parents, levels of stress these experiences engender, and their relationship to anxiety, parents of infants hospitalized in three NICUs were interviewed using the Parental Stressor Scale: NICU and the State-Trait Anxiety Inventory. Alterations in parental role caused by the infant's illness generated the greatest stress. The second highest areas of stress were the infant's appearance and behavior. State anxiety levels were higher than normative means and significantly related to stress scores.     

Rearing the Child Who Is Technology Dependent: Perceptions of Parents and Home Care Nurses

ISSUES AND PURPOSE. Most children who are dependent on technology for survival live with their families at home. This study explores the perceptions of parents and home care nurses regarding rearing the technology-dependent child.
DESIGN AND METHODS. In this qualitative study, interviews were conducted with 16 parents whose child is technology dependent and 15 registered nurses who provided home care.
RESULTS. Rearing the child who is technology dependent is similar to but different from raising other children. Parental communication and negotiation of child-rearing expectations with home care nurses is essential.
PRACTICE IMPLICATIONS. Improved collaboration and communication between parents and nurses may reduce parental stress and enhance development for children who are dependent on technology.     

Parental support in neonatal intensive care units: a cross-cultural comparison between New Zealand and Japan

This is a cross-cultural comparative study involving both quantitative and qualitative data analyses. This study examines sources of parental stress in the two neonatal intensive care units (NICUs) located in New Zealand and Japan and explores how cultural norms of NICU care environments influence parental stress-related experiences and nursing support. The three main sources of data collection were the following: a NICU staff interview, parental interview, and parental questionnaire survey, the PSS: NICU. Thirty-one pairs of parents in each NICU (N = 121) participated in this study. The differences between the two NICUs in terms of the NICU care environment and sources of parental stress within the NICU contexts were identified, highlighting NICU characteristics associated with the sources of stress in the two NICUs. Recognition of the norms of NICU care environments that may hinder parent-staff communication is an important element of NICU nursing practice.     

Sleep Deprivation Is an Additional Stress for Parents Staying in Hospital

PURPOSE.  This study aims to describe the sleep experience of parents staying overnight with their children in hospital.
DESIGN AND METHODS.  Parents ( n  = 102) completed the Verran and Snyder-Halpern Sleep Scale following a night spent with their children in an Australian tertiary pediatric hospital .
RESULTS.  Parents experienced sleep deprivation and poor quality of sleep, reporting a mean sleep period of 4.6 hr ( SD  = 2.1). Having only one child in the room was the only variable that significantly influenced the quality or amount of parental sleep .
PRACTICE IMPLICATIONS.  Parental sleep deprivation needs to be acknowledged and accommodated when nurses and parents negotiate the care of children in hospital .     

Addressing the Needs of Mothers with Infants in the Neonatal Intensive Care Unit: A Qualitative Secondary Analysis

PurposeMothers of infants hospitalized in neonatal intensive care units (NICUs) need to be recognized as essential partners of the care team as their presence and involvement are key to infants' health and developmental outcomes. Addressing mothers' perceived needs is beneficial for the improvement of supportive nursing care; however, little qualitative research on their unmet needs has been conducted in South Korea. This study assessed mothers' perspectives on their NICU experiences and their unmet needs within the South Korean cultural context.MethodA cross-sectional, multicentered, secondary analysis study was conducted using the written responses to an open-ended questionnaire. Of the 344 NICU-experienced mothers, 232 throughout South Korea (seven cities and five provinces) voluntarily completed the questionnaire via smartphone-based or web-based surveys. Their narrative responses were analyzed using thematic content analysis guided by the critical incident technique.ResultsFour themes emerged. NICU-experienced mothers of preterm infants referred to the “family-friendly environment” (16.4%) as a positive experience. The greatest unmet need was “relationship-based support” (58.2%), followed by “information and education-based support” (20.0%) and “system-level challenges” (5.4%).ConclusionThe importance of creating a family-friendly NICU environment should be emphasized by ensuring 24-hour unrestricted access and encouraging active parental involvement in infant care, as well as actively supporting NICU families through supportive words and actions. The assurance of antiinfection management and better staffing levels should be fundamentally guaranteed to NICU staff.     

The parent–nurse relationship in the neonatal intensive care unit context – closeness and emotional involvement

Aim and background:  Family-centred care, which acknowledges parents as partners in care, is a desirable and essential part of neonatal nursing. There has been extensive research on parents' experiences of parenting in neonatal intensive care units (NICU), but there is little research on nurses' experiences of being in these enduring close relationships. The aim of this paper is to explore parents' and nurses' experiences of the close parent–nurse relationship when a premature child is hospitalized.
Method:  The design was exploratory with a hermeneutic approach. The methods used were participant observation and in-depth interviews with six mothers, six fathers and six nurses in a Norwegian 13-bed NICU. Eighteen individual interviews and 160 hours of observations were conducted over 27 weeks from 2003 to 2004. This study complies with the principles of the Declaration of Helsinki. The Regional Committee for Medical Research Ethics, the Ombudsman for Privacy in Research at the Norwegian Social Science Data Services and the hospital's research department approved the study protocol.
Results:  The NICU context is a technological environment where human interaction is a crucial issue. The character of the context and the ongoing interactions drive parents and nurses into close relationships. Closeness increases the emotional involvement and the boundary between the professional and the personal approach is threatened. The commitment of being close, combined with the emotional involvement, can be an emotional burden to both parents and nurses.
Conclusion:  Parent–nurse closeness in NICU is desirable; however, the emotional burden of this closeness seems to be seldom problematized. Awareness about the need to strike a balance between closeness and distance can positively influence parents' independence and nurses' ability to maintain professional relationships with their primary care parents.     

Parental perspectives on technology use to enhance communication and closeness during the COVID-19 parental presence restrictions

ObjectiveTo explore parental perspectives on the use of technology in neonatal intensive care units (NICU), and its impact during COVID-19 parental presence restrictions.MethodsCo-designed online survey targeting parents of infants admitted to a Canadian NICU from March 1st, 2020 until March 5th, 2021.ResultsParents (n = 117) completed the survey from 38 NICUs. Large variation in policies regarding parental permission to use technology across sites was reported. Restrictive use of technology was reported as a source of parental stress. While families felt that technology helped them feel close to their infant when they could not be in the NICU, it did not replace being in-person.ConclusionLarge variation in policies were reported. Despite concerns about devices in NICUs, evidence on how to mitigate these concerns exists. Benefits of using technology to enhance parental experiences appear substantial. Future study is needed to inform recommendations on technology use in the NICU.     

The health of children with cerebral palsy and stress in their parents

Title.  The health of children with cerebral palsy and stress in their parents.
Aim.  This paper is a report of a study conducted to describe the health of children with cerebral palsy and investigate predictors of stress in their parents.
Background.  Children with severe cerebral palsy tend to have poorer health than their able-bodied peers, and their parents are more likely to be stressed and have poorer health.
Method.  A cross-sectional survey with home visits using standard questionnaires was administered to parents in 2004–05. A total of 102/199 (51%) children and parents participated. The children were compared with a normative sample.
Results.  Children with cerebral palsy had poorer physical health, and 79% of parents reported that their child had moderate to severe pain. Their poorer health, in comparison with the normal sample and measured by the Child Health Questionnaire, was related to feeding problems and seizures, general health perceptions to intellectual and feeding impairment, and family activities with severe motor, intellectual and feeding impairment. Poorer psychological well-being on the hyperactivity domain of the Strengths & Difficulties Questionnaire was related to feeding difficulties, on the prosocial domain to more severe forms of all child impairments, and on the social impairment scale to intellectual impairment. Children with psychological problems had statistically significantly increased odds (OR = 7·2, 95% CIs 2·6–20·3) of having parents with high stress.
Conclusion.  Children with cerebral palsy and associated impairments are at higher risk of poorer health and family well-being. A family-centred approach to the care of children with cerebral palsy and their families is essential to ensure both receive adequate care and support.     

Promoting Normalization in Families With Preschool Children With Type 1 Diabetes

issues and purpose. The family environment is the most important influence on child adaptation to type 1 diabetes. A plan of care assists parental adaptation in families with a preschool child with type 1 diabetes.
conclusions. The family environment is affected by the family's progress toward normalcy. Normalization can be facilitated by nursing interventions that promote parental mutuality in management and the development of a parental support system.
practice implications. Nurses can provide education about Type 1 diabetes and its management in preschool children to fathers, other family members, and family friends to encourage their involvement in caregiving. Parental mutuality in management and an adequate parental instrumental support system facilitates normalization and affects the family environment, thus promoting child adaptation.     

Parental interaction with infants treated with medical technology

Background: It is well established that parents must interact with their new‐born babies to facilitate attachment. However, very little is known about how parents perceive different types of medical technology products commonly used in the neonatal intensive care unit (NICU) as barriers to their wish to interact with their infants. Aim: This study aims to examine to what extent the different medical technology products commonly used in the NICU are perceived by parents to be obstacles in their wish to interact with their babies. Design and methods: In 2010, a cross‐sectional survey, using a questionnaire specifically developed for this study, was conducted among the parents of children who were discharged from any of the five NICUs of the Västra Götaland region in Sweden. A consecutive sample of 248 parents participated, and multiple regressions and t‐tests were used to analyse the data. Results: The parents generally perceived the various medical technology products differently, according to the perceived level of obstruction. The variables of gender, age, educational level, origin, gestational age, previous experience of being a parent, and the offer of accommodation at the NICU were significantly associated with the perceived level of obstruction in the parents’ wish to interact with their baby while the baby was being treated with different medical technology products. Conclusion: The primary implication for practice is that to facilitate attachment, nurses should involve different categories of parents in different ways in the care of their children, depending on the equipment being used in the treatment of the children. Thus, the individual care plan should explicitly include the details of the specific medical equipment, because although its use is medically beneficial for the child, it is associated with potential liabilities regarding parent–child interaction and, consequently, regarding parent–child attachment.     

Effects of preadmission preparation on compliance with home care instructions

This study was conducted to test the effects of preadmission preparation on parent and child psychological upset at the time of tonsillectomy surgery, on child postsurgery behavior, and on parental compliance with home care instructions. Forty children aged 3 to 11 years who underwent tonsillectomy on an outpatient basis were studied. No significant differences were found in parent and child behaviors of those people in the preparation group compared with those in the nonpreparation group. Parental reports of home care revealed that the majority of parents did not follow at least one half of the physicians' home care instructions. The findings of the study indicate the need to further examine factors associated with parental compliance with home care instructions.     

Measuring neonatal intensive care unit-related parental stress

AIMS: This paper reports a study: (1) to determine the validity and reliability of the Parent Stressor Scale:Neonatal Intensive Care Unit (PSS:NICU) for use with United Kingdom (UK) parents; (2) compare UK scores with those from a contemporary reference sample from the United States (US), (3) to identify the sources of greatest NICU-related stressors for parents and (4) to identify demographic or situational factors influencing NICU-related parental stress. BACKGROUND: Evaluation of the adequacy of nursing care and psychosocial support services for parents of ill infants in the NICU requires valid and reliable measures of parental stress. The PSS:NICU is a well-validated scale developed in the US to measure NICU-related parental stress. However, it has not been tested in the UK. METHODS: Consecutive samples of parents (n = 257) of infants in nine UK NICUs and two reference US units completed the PSS:NICU and the Spielberger State-Trait Anxiety Scale approximately 1 week after admission. Psychometric properties of the PSS:NICU, including internal consistency reliability and construct, concurrent and predictive validity, were evaluated. RESULTS: PSS:NICU scores were similar in the UK and US samples and high internal consistency reliability was found for all metrics (e.g. Overall Stress: 0.94 for both samples). A three-factor principal components solution accounted for 66% of the variance in the scores, with the items grouped into the three a priori scales specified in the PSS:NICU (Infant Behaviour and Appearance, Parental Role Alterations, and Sights and Sounds). Stress Occurrence and Overall Stress were moderately correlated with State Anxiety in both samples (r = 0.46-0.61, P < 0.001). Thirty-one per cent of the variance in Stress Occurrence in the UK sample was explained by State Anxiety, infant severity of illness score, parent gender, and less frequent visitation. CONCLUSIONS: The PSS:NICU demonstrated appropriate psychometrics in a large sample of parents from diverse NICUs in the UK. These findings support its wider use in research and clinical practice to identify parental distress and evaluate the effectiveness of nursing care and psychosocial support services for parents.     

Why reading matters. The development of a read-a-thon for neonatal intensive care units to encourage neonatal exposure to language

BackgroundThe neonatal intensive care unit is an unfamiliar environment to parents and infants, fraught with noxious stimuli including the sound of alarms and the experience of pain and stress. Encouraging opportunities for a baby in the NICU to be exposed to purposeful language from parents every day is a way forward for the infants future language and literacy development and their bonding and attachment with caregivers.MethodsA cross sectional anonymous electronic survey design was utilised to explore parent perceptions both pre and post intervention of the read-a-thon initiative and the provision of reading resources to parents.InterventionThe Little Reader's Read-a-thon was an initiative to promote reading aloud to infants in the NICU as it is a known key predictor of future literacy and language skills at school age.ResultsThrough this initiative, parental engagement in reading aloud to their baby in the first week of life doubled. Barriers to parental reading aloud to an infant in the NICU were identified including the lack of privacy and being able to hold their baby during reading.ConclusionsProviding local parent resources and facilitating an annual read-a-thon encouraging reading from birth has more than doubled the instances of reading to baby within the first week of life. Parents benefit from support and encouragement to read to their baby, however there are some enabling and disabling factors which NICUs should consider.     

Primary Child Health Care Nurses' assessment of health risks in children of foreign origin and their parents – a theoretical model

Background:  According to recent studies, intercultural interaction in health care between clients and care-givers seems to be problematic. A recent Swedish study revealed that a majority of Primary Child Health Care Nurses (PCHNurses) experienced difficulties in their interaction with children and parents of foreign origin. As every third child in the Primary Child Heath Care (PCHC) services is of foreign origin it seem to be of utmost importance to examine in depth how these difficulties could be understood and explained.
Aim:  The present study aimed at a theoretical explanation of the core problem concerning PCHNurses' interaction with children and parents of foreign origin, as experienced by the PCHNurses.
Methods:  Fifteen PCHNurses working in the PCHC services were interviewed. Grounded Theory was used as research methodology because focus is on social interactions and the aim is to theoretically explain unarticulated social processes.
Results:  Anxiety about missing children, exposed to risks of ill-health, due to various conditions in the child's home environment, turned out to be the PCHNurses' main concern. An assessment of health risks was initiated, when PCHNurses thought that psychosocial conditions in the child's environment might cause ill health. Some of the psychosocial conditions were difficult to assess, as they were unfamiliar and not understood by the PCHNurses. In such difficult-to-assess cases, when the PCHNurses considered the possibility of undefined risk to the child's health they held on to the assessment of the cases and worked out strategies to learn and understand more about the child and the child's home environment. A theoretical model grounded in data was created accounting for the variation in the assessment process and the different strategies used. Implications are discussed and recommendations for improvements are given.     

O father, where art thou? Parental NICU visiting patterns during the first 28 days of life of very low-birth-weight infants

To study the frequency and duration of parental visits to neonatal intensive care units (NICU) during the first 28 days of life of preterm infants in relation to medical variables, sociodemographic factors, and subsequent outpatient follow-up examinations. Retrospective chart review of 127 infants with a birth weight less than 1500 g born between Jan 1, 2009, and Dec 31, 2009, at 2 tertiary NICUs. The average frequency of parental visits during the first 28 days of life declined significantly over time (P < .05) while the duration of visits remained constant. Average frequency and duration of visits per day were consistently lower in fathers than in mothers (median [interquartile range]: 0.6 [0.4-1.0] per day vs 1.1 [0.9-1.4] per day, 72.5 [32.1-108.9 [min/d vs 133.4 [75.4-174.3] min/d). While a history of treatment for infertility was correlated with significantly more frequent and longer parental NICU visits in the first 2 weeks, having older children at home was correlated with shorter visits during the first week. Visiting patterns showed no relation to attendance at follow-up examinations at 6 months corrected age. Mothers spend more time with their preterm infants in NICUs than fathers. We suggest measures to increase paternal involvement with hospitalized preterm infants.     

Factors Associated With Parental Distress

PROBLEM:  Associations of perceptions of social support, personal control, and child behavioral problems to distress in parents of children with mental health problems were examined.
METHODS:  One hundred and fifty-five parents of children 2–19 years old receiving community mental health services participated.
FINDINGS:  Stepwise regression analysis identified internalizing and externalizing child behaviors, perceived personal control, and tangible social support as independent predictors of parental distress. Independent predictors of objective distress included internalizing child behaviors, perceived personal control, and intangible social support.
CONCLUSIONS:  Internalizing and externalizing child behaviors were significantly associated with parental distress. Perceived personal control moderated the relationship between internalizing child behaviors and parental subjective distress.     

Parental stress in the neonate intensive care unit and its association with parental and infant characteristics

PurposeTo examine the association between parental and infant characteristics and parental stress in the neonatal intensive care unit (NICU).MethodsA Quantitative cross sectional design was used. A convenience sample of 376 parents with hospitalized infant in NICU was recruited. Self-administered questionnaires were used to collect the quantitative data, which include Infant Demographic Data Questionnaire, the Parent Demographic Data Questionnaire, and the Parental Stressor Scale: NICU.FindingsCertain Infant characteristics are found to be significant factors that influence stress levels among parents. However infant gender did not significantly affect parental stress. Parent characteristics (parent age, parent gender, first baby experience, history of infertility, and medical history) have significant influence on stress levels among parents.ConclusionsCertain parents and infants characteristics variables have an impact on the stress experienced by parents with their hospitalized infants in NICU. Clinical Implications: Knowing the relationship of certain parents and infants variables and stress level can help to focus on relevant parental and infant variables so that timely interventions to improve parents' well-being can be developed.     

Parent's involvement in decisions when their child is admitted to hospital with suspected shunt malfunction: study protocol

Title.  Parent's involvement in decisions when their child is admitted to hospital with suspected shunt malfunction: study protocol.
Aim.  This paper outlines the protocol for a study aimed at exploring parent's involvement during professional–parent interactions and decisions about their child's care in the context of suspected shunt malfunction.
Background.  Hydrocephalus is a long-term condition treated primarily by the insertion of a shunt that diverts fluid from the brain to another body compartment. Shunts frequently malfunction, and parents of children with shunted hydrocephalus are responsible for recognizing and responding to shunt complications. Parents feel that interactions with professionals when they seek healthcare advice for their child do always not encourage active participation in care decisions.
Methods.  The study design is based on qualitative methodologies: a combination of conversation analysis applied to consultation recordings of professional–parent interactions when a child is admitted to hospital with suspected shunt malfunction, and semi-structured follow-up interviews with the same participants within 2 weeks of the consultation.
Participants.  This is a prospective study and participants will be purposefully selected. Parents of children who have been admitted to hospital with suspected shunt malfunction and healthcare professionals responsible for the initial assessment of the child will be invited to participate.
Discussion.  The study will identify how decisions about a child's care are negotiated between parents and healthcare professionals at key stages of the care pathway. In addition, examining interactions between healthcare professionals and parents may identify approaches that support or hinder parents in contributing to the decision-making processes when they seek advice from healthcare professionals.