Parents In Neonatal Intensive Care Unit Research Articles

A dyadic analysis of negative emotion personality predisposition effects with psychological distress in neonatal intensive care unit parents.

The relation of parents’ personality predisposition to guilt, shame, and fear of death with symptoms ofposttraumatic stress, anxiety, and depression was examined in 67 couples who were the parents of sicknewborn infants previously hospitalized in a Neonatal Intensive Care Unit. The Actor-Partner Interde-pendence Model method of dyadic analysis was used to determine the relation of parents’ predispositionto guilt, shame, and fear of death to their own posttraumatic stress, anxiety, and depression (actor effect),and to the posttraumatic stress, anxiety, and depression of their partners (partner effect). The couplemembers were not statistically distinguishable by gender. Guilt had a significant actor effect withposttraumatic stress, anxiety, and depression, and a significant partner effect with anxiety and depression.Guilt explained 15–18% of the variance in these measures of psychological distress. Fear of death hada significant actor effect with all measures of psychological distress, but none of the partner effects wasstatistically significant. Shame did not predict posttraumatic stress or anxiety, but there was a significantactor effect with depression. Fear of death and shame explained only small proportions (3–6%) of thevariance in the psychological distress variables with which they had statistically significant relationships.The guilt effects with psychological distress were intrapersonal (actor) and interpersonal (partner),whereas the fear of death and shame effects were intrapersonal. These emotions, particularly fear of deathand shame, tend to be elusive as well as aversive, but they are important forerunners of psychopathologyand deserve specific attention in psychological counseling.Keywords: parents, neonatal intensive care, posttraumatic stress, anxiety, depression

Innovative Instructional Design to Alleviate the Shortage of Clinical Practice Sites for Education Through the Use of a Simulated OB Experience

Leadership: Self-scheduling, peer interview team. Practice: Developed policies for unit practice changes: kangaroo care, cue-based feeding, and care of micropreemie. Professional development: Unit skills fair, “Policy of the Month” as continuing education. Service and Satisfaction: Neonatal intensive care unit parent support group, developed floating expectations for staff. Research: Cue-based feeding research project. Quality and safety: Because of a catheter associated blood stream infection initiative and a methicillin-resistant Staphylococcus aureus action plan, we have more than 1,000 days with no reported cases of catheter associated blood stream infection, and we have been methicillin-resistant Staphylococcus aureusfree for almost 1 year.

Parenting occupations in the neonatal intensive care unit

IntroductionOccupational therapy has a recognised role in the provision of services within neonatal intensive care, however there has been limited exploration of the concept of parenting as an occupation as...

Parent Education: The Cornerstone of Excellent Neonatal Nursing Care

When an infant is admitted to a neonatal intensive care unit (NICU), a family is also admitted. With this admission come parents, siblings, the extended family, and friends who each have different educational needs as they learn to care for and interact with the newborn, as well as provide support for the family. Numerous studies have been conducted identifying the various stressors NICU families experience and how best to meet their emotional as well as educational needs. Neonatal intensive care unit nurses play an integral role in educating NICU families during hospitalization and also in preparing them for discharge. The goal of parenting education is to provide support and information that allows parents to move from the hospital setting, where care for the newborn is overseen by health professionals, to caring for the newborn confidently and independently at home. How NICU parents adapt and gain confidence in their parenting experience is influenced by previous experience, support from others, parental stress and coping, individual learning styles including literacy and communication, and individual infant characteristics. Neonatal intensive care unit nurses must identify factors influencing the parents' learning styles and adapt necessary education strategies to meet the needs of families in their care. Neonatal intensive care unit parents bring an array of backgrounds to the parenting experiences that influence their ability to learn. Parents who have previous parenting experience may feel confident in their ability to care for newborns yet challenged by feelings of inadequacy in their ability to care for a premature infant who seems fragile and vulnerable. Added to the perception of vulnerability can be the premature infant's immature neurobehavioral state that may not provide parents with feedback or cues indicating care is meeting the infant's needs. Reassurance and education addressing the immature responses and how to read premature infant cues can reassure

Web-based education for low-literate parents in Neonatal Intensive Care Unit: Development of a website and heuristic evaluation and usability testing

Purpose Low health literacy has been associated with poor health-related outcomes. The purposes are to report the development of a website for low-literate parents in the Neonatal Intensive Care Unit (NICU), and the findings of heuristic evaluation and a usability testing of this website. Methods To address low literacy of NICU parents, multimedia educational Website using visual aids (e.g., pictographs, photographs), voice-recorded text message in addition to a simplified text was developed. The text was created at the 5th grade readability level. The heuristic evaluation was conducted by three usability experts using 10 heuristics. End-users’ performance was measured by counting the time spent completing tasks and number of errors, as well as recording users’ perception of ease of use and usefulness (PEUU) in a sample of 10 NICU parents. Results Three evaluators identified 82 violations across the 10 heuristics. All violations, however, received scores <2, indicating minor usability problems. Participants’ time to complete task varies from 81.2 s (SD = 30.9) to 2.2 s (SD = 1.3). Participants rated the Website as easy to use and useful (PEUU mean = 4.52, SD = 0.53). Based on the participants’ comments, appropriate modifications were made. Discussion and conclusions Different types of visuals on the Website were well accepted by low-literate users and agreement of visuals with text improved understanding of the educational materials over that with text alone. The findings suggest that using concrete and realistic pictures and pictographs with clear captions would maximize the benefit of visuals. One emerging theme was “simplicity” in design (e.g., limited use of colors, one font type and size), content (e.g., avoid lengthy text), and technical features (e.g., limited use of pop-ups). The heuristic evaluation by usability experts and the usability test with actual users provided complementary expertise, which can give a richer assessment of a design for low literacy Website. These results facilitated design modification and implementation of solutions by categorizing and prioritizing the usability problems.

Acute Traumatic Stress in Neonatal Intensive Care Unit Parents: Relation to Existential Emotion-Based Personality Predispositions

This study explored the relation between personality predisposition to existential emotions—shame (Test of Self-Conscious Affect), guilt (Guilt Inventory), and fear of death (Collett-Lester Fear of Death Scale)—and acute traumatic stress symptom severity (Stanford Acute Stress Reaction Questionnaire) in a cohort of parents of neonatal intensive care unit infants (mothers, N = 110; fathers, N = 94). There was a significant correlation between fear of death and acute stress symptom severity in both mothers and fathers, and fear of death explained a significant unique proportion of the variance in acute stress symptom severity in both sexes. Shame and chronic guilt made significant contributions to the variance in acute stress symptom severity in mothers, though the relationship was mediated by fear of death.

Psychiatric Help for Caregivers of Infants in Neonatal Intensive Care

Psychiatric Help for Caregivers of Infants in Neonatal Intensive Care

Ethical issues for parents of extremely premature infants

Evidence suggests that NICU (neonatal intensive care unit) parents with an baby born at the threshold of viability do not always receive sufficient counselling during an emergency admission and as a consequence, are not well-informed to accept withdrawal of treatment or quality of life decisions. As prospective parents are not educated earlier in pregnancy about extreme premature delivery, crucial information and counselling explaining neonatal issues is only offered to labouring women during their emergency admission. As a result, most have difficulty understanding the risks and benefits of baby's treatment and therefore rely heavily on the perinatal physician to take responsibility for the initial treatment. However, this lack of understanding often leaves parents disadvantaged, as many are left unprepared to participate objectively in quality of life decisions. According to recent research, morbidity figures remain relatively high with one in five survivors at risk of a long-term disability. This shows that some parents will still be confronted by ethical decision of whether or not to continue treatment, and this may not be apparent until days after treatment has been established. As recent research has shown, parents do, in fact, want increased involvement in the decision-making process regarding their child's treatment. Therefore, it has been argued, that parents should be provided with information earlier in pregnancy to familiarise themselves with quality of life issues which they may encounter as the NICU parents of an extremely premature infant.

Influenza vaccination rates of expectant parents with neonatal intensive care admission

Objectives. To ascertain the rate of influenza immunization in pregnant couples whose infants required neonatal intensive care unit (NICU) admission, and to clarify predictors for trivalent inactivated influenza vaccine (TIV) use in this targeted parent population.Study design. During the 2005–07 influenza seasons, parents of NICU patients at two level III centers were surveyed about TIV after their infant's NICU admission. Data on immunization history, location of immunization, and other risk factors for influenza were assessed. Infant data including birth weight, gestational age, and multiple births were also obtained.Results. Seven hundred and eighty-six parents had infants in the NICU. Five hundred and forty-seven (69.5%) were surveyed. The overall parental rate of vaccination was 23.2% (127/547). The parental vaccination rate did not differ between years (23.2% vs. 23.2%). Mothers were less likely to have received TIV prior to delivery than fathers (17.0% vs. 28.4%; p < 0.02). Of the population, 19.3% received immunization from their OB/GYN. A concordance rate of 8.9% was noted between married couples receiving TIV. More parents received TIV in January and February of the influenza seasons than November and December (p < 0.05, Student's t-test). Influenza immunization rate in NICU parents was unrelated to infant's gestational age, parental age, total number of risk factors for TIV, hospital length of stay, multiple gestation, or need for high risk obstetrical care.Conclusions. TIV rates among high-risk pregnant parents whose infants are admitted to NICU are lower than expected compared with the general population. Patient refusal of influenza vaccine is not a major obstacle toward acceptance.

Trivalent Inactivated Influenza Vaccine Compliance Rate in Neonatal Intensive Care Unit Parents

The American Academy of Pediatrics (AAP) recommends injected, inactivated influenza vaccine for all close contacts of high-risk infants. This population includes parents of infants younger than 59 months of age, with an emphasis on children 0-6 months who are not direct candidates for immunization. This 0-6 month age group is a major component of the neonatal intensive care unit (NICU) population. No data exist on the compliance rate with influenza vaccine in this specific parent population. The purpose of this study was to assess the compliance rate among this parent population and compare it with vaccine use in the general adult population at the time, which has traditionally ranged from 25% to 32%. The study also sought reasons for poor compliance with flu vaccine. Answering this question is important in determining whether programs directly aimed at NICU parents are required to achieve compliance or if simply informing parents of the need to be immunized results in sufficient vaccination rates. For 14 weeks during the 2004-2005 influenza season, 92 randomly selected parents (from 56 inborn infants) underwent an informational program regarding influenza vaccine and the risks and benefits of vaccination. Parents were surveyed in the spring to assess if they obtained the injection the previous winter. Subjects were parents of NICU patients admitted to the New York University NICU during the 14-week study period. The main outcome measure was the influenza vaccination rate of the parental cohort that underwent the informational program. For those who intended to receive influenza vaccination but did not, reasons for noncompliance were assessed via standardized telephone interview. After the information session, 85 parents (92%) indicated they intended to obtain the vaccine; however 30 parents (32.6%) actually received it by the following spring. The most commonly cited reason for failing to obtain influenza vaccine was convenience. No correlation between parents who obtained the vaccine and infant birth weight, gestational age, or length of stay was observed. Compliance with national recommendations to obtain trivalent inactivated influenza vaccine in this highly specified parent population is roughly equivalent to the national average of all adults in the general population. Caregivers of high-risk neonates must encourage/offer immunization to this targeted population.

Infants admitted to a neonatal intensive care unit: parental psychological status at 9 months

This paper reports on the 9-month follow-up of parents who had an infant admitted to neonatal intensive care unit (NICU) compared to parents of full-term health infants. The psychological status of the parent groups is compared and factors associated with status change are examined. Prospective longitudinal study of random sample of 447 parents (mother and father with an infant admitted to the NICU and 189 parents (mother and father) with term infant not requiring NICU admission. Parents' depression and anxiety symptoms were assessed at infant birth and 9 months later. The increased levels of depression and anxiety symptoms evident in NICU parents after their infant's birth were no longer apparent by 9 months. Higher initial symptom severity and perceived quality of the couple relationship were most commonly associated with improvement. Other factors related to symptoms change were number of baby hospitalizations for fathers and being in the NICU, age and living with the infant's father or mother. For the majority of parents having an infant admitted to the NICU does not result in ongoing psychological distress.

Communicating with parents of premature infants: who is the informant?

To determine what sources of information are most helpful for neonatal intensive care unit (NICU) parents, who provides NICU parents with the information, and also what expectations parents have regarding obtaining information. A 19-item questionnaire was given to the parents of infants 32 weeks or younger prior to discharge from the NICU. Out of the 101 parents who consented, almost all of the parents (96%) felt that 'the medical team gave them the information they needed about their baby' and that the 'neonatologist did a good job of communicating' with them (91%). However, the nurse was chosen as 'the person who spent the most time explaining the baby's condition, 'the best source of information,' and the person who told them 'about important changes in their baby's condition' (P<0.01). Although the neonatologist's role in parent education is satisfactory, the parents identified the nurses as the primary source of information.

Infants in a neonatal intensive care unit: parental response

Objective: To compare the psychosocial functioning of the parents (mother and father) of infants admitted to a neonatal intensive care unit (NICU) with the parents of infants born at term...

Audio recordings of consultations with doctors for parents of critically sick babies

Family centred care is an important part of neonatal intensive care. Ensuring effective communication in the neonatal intensive care unit (NICU) is a challenge but is crucial to the implementation of family centred care. Providing parents in NICU with audiotape recordings of their conversations with neonatologists could promote effective communication. The objective of this review was to assess the usefulness of providing parents of sick babies with audiotape recordings of their consultations with neonatologists. The standard search strategy of the Cochrane Neonatal Review Group was used. This included searches of electronic databases: Oxford Database of Perinatal Trials, Cochrane Central Register of Controlled Trials (CENTRAL, The Cochrane Library Issue 3, 2004), and MEDLINE (1966 - February 2004); and previous reviews including cross references and expert informants. There were no language restrictions applied to the electronic searches. Hand searching of conference and symposia proceedings was restricted to the English language. Randomised or quasi-randomised trials of any form of providing parents of babies in NICU with audiotape recordings of their conversation with doctors in the NICU. Four reviewers independently assessed the eligibility of the trials. Our searches did not identify any trials which met the eligibility criteria. There is no information available from randomised or quasi-randomised trials to demonstrate any benefits from providing parents in NICU with audiotape recordings of their conversations with neonatologists.

Psychological health of family caregivers of children admitted at birth to a NICU and healthy children: a population-based cross-sectional survey

BackgroundThere is little information in the research literature on how parents of children who spend time in a neonatal intensive care unit (NICU) adapt psychologically to the demands of caregiving beyond the initial hospitalization period. Our aim was to compare parents of NICU children with parents of healthy full-term children, looking specifically at the relationship between parental psychosocial health and child characteristics, as well as the relationship between important predictor variables and psychosocial health.MethodsA cross-sectional survey was sent to parents as their child turned 3 1/2 years of age. The setting was the province of British Columbia, Canada. The sample included all babies admitted to tertiary level neonatal intensive care units (NICU) at birth over a 16-month period, and a consecutive sample of healthy babies. The main outcome was the SF-36 mental component summary (MCS) score. Predictor variables included caregiver gender; caregiver age; marital status; parental education; annual household income; child health status; child behavior; birth-related risk factors; caregiver strain; and family function.ResultsPsychosocial health of NICU parents did not differ from parents of healthy children. Child health status and behavior for NICU and healthy children were strongly related to MCS score in bivariate analysis. In the pooled multivariate model, parental age, low family function, high caregiver strain, and child's internalizing and externalizing behavioral symptoms were independently associated with lower psychosocial health. In addition, female gender was associated with lower psychosocial health in the NICU group, whereas lower education and child's problem with quality of life indicated lower psychosocial health in the healthy baby group.ConclusionsOverall, parental gender, family functioning and caregiver strain played influential roles in parental psychosocial health.

How can we say to neonatal intensive care unit parents amid crisis, "you are not alone"?

Perhaps the greatest challenge for clinicians in the neonatal intensive care unit (NICU) is decision-making for the critically ill, or dying, newborn with his/her family. Although we strive to engage in shared decision-making, issues of human values, prognostic uncertainty, and plurality may impede good communication. Our sympathy may be at work in our trying to understand the complexities of circumstances that a particular family operates in. Empathy, however, requires that we be able to act as if we were the other person. More than simply seeing or understanding, it requires our knowing—in essence, putting ourselves in their position and (vicariously) experiencing their dilemma. Short of having experienced similar circumstances ourselves, many of us might feel that simply saying the words, “You are not alone” is inadequate. How might we say this more sincerely and act more effectively thereafter?Clinicians can now incorporate in their practice the use of a recently produced videotape entitled “You Are Not Alone” (Colorado Trust, Colorado Collective for Medical Decisions, and Nickel’s Worth Productions, 1998, Denver, CO). It is thoughtfully composed and within 30 minutes relates parental concerns, values, and considerations from half a dozen real cases in which parents faced the difficulties of dealing with prognostic uncertainty in the NICU. Included are cases of impending death or significant morbidity, the limits of viability, lethal anomalies, decisions to continue, limit, or withdraw life-support measures, or undertake what were considered risky surgical interventions. Interjected amid these parents’ stories, replete with scenes from the NICU and, for some, scenes from home thereafter, are observations from key NICU staff: Dr Peter Hulac, a neonatologist1; Father Bill Pounds, a chaplain, NICU nurses; and psychologist-author Deborah Davis, PhD. The tape itself comes with a “User’s Guide” complete with suggestions for its use in educational settings for staff and also for interactive settings with parents.As a neonatologist, I find this videotape to be valuable in conveying our mutual burden of decision-making—something beyond our own telling it (to colleagues or families). It provides a look into scenarios similar to those our patients’ families are facing: facilitating parents’ dealing with their infant’s experience and recognizing they are not alone. This helps to both overcome denial (“This can’t be happening to me”), and validate their very real and present feelings that are experienced amid crisis. It is also helpful to hear from parents on the video who have endured these experiences how they arrived at their own decision for their child—bringing the focus of decision-making to what is in the best interest of the infant. Although parents and staff relate other concerns in the video, the message of the child’s best interest rings through clearly—whether the decision was to continue life-extending treatments or opt for comfort care. Poignant words are expressed about pain, suffering, selfishness, life’s meaning, and living with one’s decisions. In so “seeing and hearing” these parents, we can better approximate their place and their plight—we can better employ empathy. Finally, it allows parents and staff to attend to potential lingering concerns (“What will I think of myself in the years ahead when I remember the decision I make today?”).This videotape was an outgrowth of the Neonatal Care Subcommittee within the Colorado Collective for Medical Decisions Project. It involved a deliberate, multidisciplinary, and time-consuming process in generating guidelines for the appropriate use of intensive care—and then engaged the public in reflecting on them. There are 5 guidelines for neonatal intensive care stated in the tape. These are also addressed in the accompanying literature and Dr Hulac’s article.1 These guidelines, the comments of the staff and the narrator, and most importantly the visions and voices of the parents all make this tape a valuable addition to any NICU’s library.

Parents' perceptions of research with newborns.

To examine beliefs and attitudes of parents about research with babies. Survey of 72 parents of newborn babies in the neonatal intensive care unit (NICU), and 159 parents of normal newborns using instrument designed for the study. The instrument included questions with graded responses and five research scenarios with varied risks and benefits. Statistical analysis included chi(2) analysis and Fisher's exact test. Parents showed generally favorable attitudes toward research with babies. There were few differences between the two groups of parents, but there was a trend toward more trust in doctors by "NICU parents." Couples with newborns in NICU were significantly more likely to enroll their newborn in a study involving moderate risk and possible major direct benefit. Almost a third of the sample in both groups was willing to enroll their newborn in a study with moderate risk and no direct benefit. Parents believe research is necessary and want to be asked for consent, but many feel they have limited knowledge and would depend on their physician's advice. The fact, that some might enroll their newborn in a study involving a risky procedure that would not benefit the newborn, supports the notion of vulnerability and emphasizes the fact that physicians must be alert to the possibility of coercion and undue influence.

BEREAVEMENT SUPPORT FOR COUPLES FOLLOWING DEATH OF A BABY: PROGRAM DEVELOPMENT AND 14-YEAR EXIT ANALYSIS

Program development, implementation, and a 14-year exit analysis of a bereavement support program for couples whose baby died in the Neonatal Intensive Care Unit (NICU) is presented. A closed, hospital-based, time-limited (12 weeks) format was used. Team leadership was used and 54% of bereaved NICU parents participated. Each group was structured with a 2-week introductory period, open format grief-focused weekly discussions, evaluation in Week 11, and summary session with termination in Week 12. The exit analysis details program strengths, weaknesses, and recommendations. Bereavement support groups are one part of what we contend should be a comprehensive bereavement program, organized to care for families prior to, during, and after a baby's death. A sensitive, spiritually aware, supportive environment should be maintained throughout with relationship building as a cornerstone of the program.

Continuous quality improvement in the neonatal intensive care unit: evaluating parent satisfaction.

A comprehensive approach to the delivery of family-centered care in the neonatal intensive care unit (NICU) requires that parental perceptions of caregiving be addressed. The Parent Feedback Questionnaire is based on researched needs of NICU parents. Specific dimensions of needs (informational, emotional, parenting, and environmental) and overall satisfaction are identified and included in survey items. Ongoing feedback from parents is obtained and incorporated into a planned multidisciplinary continuous quality improvement program. Evaluation of data has resulted in planned interventions to reduce sources of stress and dissatisfaction for parents.

Parent and occupational therapist collaboration in the neonatal intensive care unit.

Medical care of infants in the neonatal intensive care unit (NICU) is so complex that professionals have been almost exclusively responsible for providing care to the infants and information to their families. Although federal law now mandates early intervention programs and service providers to include families in decision making and treatment implementation for their children, family-centered care has generally not been implemented in the NICU. This article offers suggestions for occupational therapists from members of the Parent Connection, an NICU parent support group. They state that a therapist can have the greatest effect on an infant's development by helping the parents develop skills to nurture their infant the way that they choose.