familia de pacientes internados en Unidad de Cuidados Intensivos
1: Crit Care Med
Crit Care Med.
anxiety and depression in family members of intensive care unit patients:
ethical hypothesis regarding decision-making capacity.
Azoulay E, Chevret S, Lemaire F, Hubert P, Canoui P, Grassin M, Zittoun
R, le Gall JR, Dhainaut JF, Schlemmer B; The French FAMIREA Group.
reanimation medicale, hopital Cochin, Paris, France.
Anxiety and depression may have a major impact on a person's ability to
make decisions. Characterization of symptoms that reflect anxiety and depression
in family members visiting intensive care patients should be of major relevance
to the ethics of involving family members in decision-making, particularly
about end-of-life issues. DESIGN: Prospective multicenter study. SETTING:
Forty-three French intensive care units (37 adult and six pediatric); each
unit included 15 patients admitted for longer than 2 days. PATIENTS: Six hundred
thirty-seven patients and 920 family members. INTERVENTIONS: Intensive care
unit characteristics and data on the patient and family members were collected.
Family members completed the Hospital Anxiety and Depression Scale to allow
evaluation of the prevalence and potential factors associated with symptoms
of anxiety and depression. MEASUREMENTS AND MAIN RESULTS: Of 920 Hospital
Anxiety and Depression Scale questionnaires that were completed by family
members, all items were completed in 836 questionnaires, which formed the basis
for this study. The prevalence of symptoms of anxiety and depression in family
members was 69.1% and 35.4%, respectively. Symptoms of anxiety or depression
were present in 72.7% of family members and 84% of spouses. Factors associated
with symptoms of anxiety in a multivariate model included patient-related
factors (absence of chronic disease), family-related factors (spouse,
female gender, desire for professional psychological help, help being received
by general practitioner), and caregiver-related factors (absence of regular
physician and nurse meetings, absence of a room used only for meetings with
family members). The multivariate model also identified three groups of factors
associated with symptoms of depression: patient-related (age), family-related
(spouse, female gender, not of French descent), and caregiver-related
(no waiting room, perceived contradictions in the information provided
by caregivers). CONCLUSIONS: More than two-thirds of family members visiting
patients in the intensive care unit suffer from symptoms of anxiety or depression.
Involvement of anxious or depressed family members in end-of-life decisions
should be carefully discussed.
Intensiva 2000 Jul-Sep;11(3):107-17
attitudes of intensive care nurses on the effect of open visits on patients,
family members, and nurses]
Marco Landa L,
Bermejillo Eguia I, Garayalde Fernandez de Pinedo N, Sarrate Adot I,
Margall Coscojuela MA, Asiain Erro MC.
Cuidados Intensivos Clinica Universitaria de Navarra Avda. Pio XII, 36 31008
The policy of
family visits to patients admitted to the intensive care unit has been
liberalized in recent years. This change has been progressive in our unit and
family members now spend long periods of time with patients. An analysis
was made of the beliefs, opinions and attitudes of
nurses toward family visits and the relation between
the beliefs of nurses and their attitude toward the effect of
an open visiting policy on patients, family members and nurses. A
descriptive correlation study was carried out in the
Polyvalent Intensive Care Unit. The sample included
46 nurses who completed a self-administered, anonymous questionnaire.
This questionnaire contained a Likert type scale analyzing the opinions
of nurses regarding the effect of visits and a differential semantic scale
analyzing nurses' attitudes toward visits by family members. The opinion that
visits had a positive effect achieved a mean value of 3.001 on a scale
with a maximum value of 4. The score obtained on the
scale of attitudes toward an open visiting policy
was 6.005, with a maximum value of 7. The correlation between
opinions and attitudes was significant and positive (r = 0.523, p > 0.0001).
Comparison of sociodemographic and other variables disclosed no statistically
significant differences, except for the variables attitude and having
children (t = -2.254, p = 0.03), which obtained a higher score. It is concluded
that the opinions of nurses regarding the positive effect of open visits
depended on their attitudes. For the most part, they were satisfied with the
current visiting policy.
3: Crit Care Med
2001 Feb;29(2 Suppl):N26-33
conference as a focus to improve communication about end-of-life care in
the intensive care unit: opportunities for improvement.
Patrick DL, Shannon SE, Treece PD, Engelberg RA, Rubenfeld GD.
Pulmonary and Critical Care Medicine, School of Medicine, University of
Washington, Seattle, WA, USA.
care unit (ICU) represents a hospital setting in which death and discussion
about end-of-life care are common, yet these conversations are often difficult.
Such difficulties arise, in part, because a family may be facing an unexpected
poor prognosis associated with an acute illness or exacerbation and, in
part, because the ICU orientation is one of saving lives. Understanding
and improving communication about end-of-life care
between clinicians and families in the ICU is an
important focus for improving the quality of care in the ICU. This
communication often occurs in the "family conference" attended
by several family members and members of the ICU
team, including physicians, nurses, and social
workers. In this article, we review the importance of communication about end-of-life
care during the family conference and make specific recommendations for
physicians and nurses interested in improving the quality of their communication
about end-of-life care with family members. Because excellent end-of-life
care is an important part of high-quality intensive care, ICU clinicians
should approach the family conference with the same care and planning that
they approach other ICU procedures. This article outlines specific steps that
may facilitate good communication about end-of-life care in the ICU
before, during, and after the conference. The
article also provides direction for the future to
improve physician-family and nurse-family communication about end-of-life
care in the ICU and a research agenda to improve this communication. Research
to examine and improve communication about end-of-life care in the ICU must
proceed in conjunction with ongoing empiric efforts to improve the quality
of care we provide to patients who die during or
shortly after a stay in the ICU.
4: Heart Lung
relationships and well-being in families with preterm infants in the
Van Riper M.
University College of Nursing, 1585 Neil Ave., Columbus, OH 43210, USA.
purposes of this study were the following: (1) to describe maternal
perceptions of family-provider relationships in the neonatal intensive care
unit (NICU) and (2) to examine associations between maternal perceptions
of family-provider relationships in the NICU and
well-being in families with preterm infants. DESIGN:
The study's design was descriptive and correlational. SETTING:
The study took place in 5 NICUs in midwestern United States. PARTICIPANTS:
The study included 55 mothers of preterm infants hospitalized in the
NICU. MEASURES: Self-report measures: the Family-Provider Relationships Instrument-NICU,
Ryff's measure of psychologic well-being, and the General Scale of
the Family Assessment Measure. RESULTS: Mothers of preterm infants who depicted
their family's relationship with their child's primary health care providers
in the NICU as positive and family-centered reported more satisfaction with
the care received. In addition, these mothers expressed a greater willingness
to seek help from health care providers. When mothers reported a discrepancy
between what they wanted the family-provider relationships to be like
and what they believed the relationship was like, they were less satisfied
with care received. Mothers who wanted and believed
they had positive family-centered relationships with
providers were more satisfied with the care received
and they reported higher levels of psychologic well-being. CONCLUSION: The
nature of the relationships that families develop with health care
providers in the NICU may have a profound influence
on how individuals and families respond to the
experience of having a preterm infant. Health care providers who incorporate
the key elements of family-centered care into their practice can have
a positive influence on well-being in families of preterm infants.
5: J Palliat
Care 2000 Oct;16 Suppl:S40-4
life support: how the family feels, and why.
Mawdsley C, Plotkin D, Webster GK, Priestap F.
Health Evaluation and Outcome Sciences, St. Paul's Hospital, Vancouver,
British Columbia, Canada.
of this study were to develop an instrument to assess the satisfaction
of family members with withdrawal of life support (WLS), and to determine
which factors are associated with greater levels of satisfaction. To do
this, we developed a self-administered questionnaire that was sent to the next-of-kin
of intensive care unit (ICU) patients dying following WLS. Over a six-month
period, 69 patients died following WLS in the ICU. Three letters were returned
"address unknown", 33 did not respond, and 33 responded, of whom
29 agreed to participate (29/66 = 44% of those
contacted). Of these, 24 (83%) strongly agreed with
the patient's death being compassionate and dignified, one moderately
agreed, one mildly agreed, one was neutral and two strongly disagreed.
Items associated with greater satisfaction included: the process of WLS
being well explained, WLS proceeding as expected, patient appearing comfortable,
family/friends prepared for the decision, appropriate person initiating
discussion, adequate privacy during WLS, chance to voice concerns. The
study suggests factors that are important to consider in ensuring family comfort
with the process of withdrawing life support.
6: Heart Lung
validity of the Critical Care Family Needs Inventory in a Dutch-speaking
Delva D, Vanoost S, Bobbaers H, Lauwers P, Vertommen H.
Psychology, University of Leuven, Belgium.
purpose of the study was to provide psychometric evaluation of the
Dutch version of the Critical Care Family Needs Inventory. SETTING: The study
took place in an intensive care unit of a university hospital. PARTICIPANTS:
The participant group included 200 adult family members visiting a patient
within the 72-hour interval after admission to the intensive care unit. RESULTS:
Principal factor analysis with varimax rotation resulted in a 5-factor solution
distinguishing 5 need types: need for information, need for comfort, need
for support, need for assurance and anxiety reduction, and need for proximity
and accessibility. The internal consistency of the resulting subscales ranged
from 0.80 to 0.62, and all factors were significantly related to each other.
The Critical Care Family Needs Inventory subscales were found to be clearly
related to the demographic variables age, sex, and education level. CONCLUSION:
The reliability and validity of the Dutch-language Critical Care Family
Needs Inventory as a diagnostic tool in family needs assessment are supported.
7: Rev Esc
Enferm USP 1999 Mar;33(1):39-48
patients' family members through an intensive care unit: difficulties of
lack of systematization?]
Santini L, da Silva VE.
Enfermagem da USP.
The purpose of
this study was to analyse the problematic situation experienced by
nurses at the moment of guiding the relatives of patients in an ICU. Therefore,
seven (7) nurses who worked in this unit, which belonged to a general,
public and training hospital in the city of Sao Paulo, were interviewed.
The results have shown that the period of guiding brings anxiety and
stress to the nurses, originated by the critical patient's condition, as well
by the deficiency of conduts and in the systematization of this activity
in the unit. Based on the results it was proposed
the creation of na assistance plan. That includes
the guiding to the family and the elaboration of a written instrument
8: Crit Care Med
Crit Care Med.
in the seriously ill patient: can family members play a role?
9: Issues Compr
Pediatr Nurs 1999 Jan-Mar;22(1):27-47
of nurse-family intervention sites to decrease health-related family
boundary ambiguity in PICU.
Swiggum P, Harbaugh BL.
Minnesota School of Nursing, Minneapolis 55455, USA. Tomli001@tc.umn.edu
The most common
explanation of parental stress associated with hospitalized children
is based on individual stress theory. Using a family stress and family systems
approach with an emphasis on examining family integrity, this qualitative
study selected families in the Pediatric Intensive Care Unit (PICU) with
high boundary ambiguity in the caregiving environment and identified potential
sites for nursing actions that impede or assist families in maintaining
family integrity. Within three days of admission of their child to a major
tertiary children's hospital PICU, 29 families were recruited and screened
with a Health-Related Family Boundary Ambiguity
Scale. High scoring families (n = 11) were
interviewed using an open-ended method. Data were analyzed using a content
analysis method, and results were interpreted within a family systems framework.
The following three potential areas of intervention to encourage family
integrity during acute illness of a child were identified: fostering family
normalcy, respecting family rights, and strengthening the family boundary.
Implications for initiating or improving family centered care in the PICU
10: J Clin Nurs
Looking out for
the patient and ourselves--the process of family integration into
Nursing, College of Health and Human Development, Pennsylvania State University,
Hershey 17033, USA. email@example.com
intensive care units (ICU) are adopting the policy of unrestricted family
visiting, families are playing an increasing role in the unit. This role may
be restricted to being involved in discussions and decisions related to
the patient or may entail a caregiving role. This
study examined how families and nurses interact to
increase or decrease the family's involvement in the ICU, how nurses
maintain control, how families remain on guard, endure and find their niche
in the ICU. The techniques of grounded theory were used to develop a model
of the process of family integration into the ICU.
This model was developed around the core variable of
'looking out for the patient-looking out for ourselves'.
The perspectives of ICU nurses, families and ICU patients in the process
of looking out for the patient while they look out for themselves are discussed,
as well as nurses maintaining the position of power and families remaining
on guard and enduring the ICU experience.
11: Arch Pediatr
Adolesc Med 1999 Sep;153(9):955-8
during invasive procedures in the pediatric intensive care unit:a
Pediatric Critical Care, University of Rochester School of Medicine
and Dentistry, NY 14642, USA. firstname.lastname@example.org
determine if allowing 1 or both parents to be present during invasive
procedures reduces the anxiety that parents experience while their child
is in the pediatric intensive care unit; to evaluate if the parent's presence
was helpful to the child and parent; and to determine whether this presence
was harmful to the nurses or physicians. DESIGN: A prospective study using
surveys (5-point Likert scale) of parents of children requiring intubation,
placement of central lines, or chest tubes. Additional surveys were completed
by bedside nurses to evaluate the effects of parental presence. SETTING:
A 12-bed pediatric intensive care unit in upstate New York. PARTICIPANTS:
The study population consisted of the parents of 16 children undergoing
1 or more procedures; 7 had undergone intubation, 11 had central lines
placed, and 2 had chest tubes placed. The control population consisted of the
parents of 7 children undergoing 1 or more procedures; 7 had undergone intubation,
5 had central lines placed, and 3 had chest tubes placed. RESULTS: Parental
presence significantly reduced the parental anxiety related to the procedure
(P = .005; Mann-Whitney test), but did not change condition-related anxiety
(P = 0.9; Mann-Whitney test). Thirteen of 16 parents found their presence
helpful to themselves (10 very, 3 somewhat) and the medical staff (11 very);
14 of 16 found their presence helpful to their child (11 very). Fifteen (94%)
of 16 pare nts would repeat their choice to watch. Fifteen (94%) of 16 nurses
found parents' presence helpful to the child (9 very) and to the parents (10
very). One nurse found a parent's presence somewhat harmful to nurses and very
harmful to the parent. Thirteen (72%) of 18 nurses indicated that allowing
parents to observe procedures was an appropriate
policy. There were no significant differences noted
in response of nurses based on years of experience.
CONCLUSIONS: Allowing parental presence during procedures decreases procedure-related
anxiety. The implications of such a policy change on physicians
and other aspects of pediatric intensive care, including medical education,
need further evaluation.
12: Can J
Cardiovasc Nurs 1997;8(4):43-6
partnership in care: integrating families into the coronary intensive care
Li-James S, Mulcahy V, Furigay C, Houghton E, Keatings M, Costello J.
Toronto Hospital, Ontario. email@example.com
introduction of Family Partnership in Care in the CICU and other pilot units,
many changes have been made. Education sessions are now unit specific rather
than in groups with multiple units. This facilitates the discussion of unit-specific
educational and implementation needs. In addition, unit-specific sessions
allow for some case scenario/role playing activities to facilitate learning
and application of the FPCP elements to the unique culture of the unit. Finally,
less emphasis is placed on the documentation, while greater emphasis is placed
on the philosophy behind the program and the nurses values and attitudes towards
families. Overall, the implementation of the FPCP in CICU has had a positive
impact on staff and patients. Staff awareness regarding the importance of
involving family in the patient's care and the benefits of this has been heightened.
Staff who were initially very skeptical have become strong advocates for
the program. The successful shift with families in "doing for"
to "working with" has enhanced the
professional practice of many nursing staff and contributed
to the overall unit functioning. Finally, the feedback from patients and
their care partners and the independence and informed decision-making fostered
by designing a plan of care with staff validates the importance of this program
in a critical care area.
13: West J Nurs
Res 1998 Apr;20(2):180-94
nurse-family relationship in the intensive care unit.
Nursing, College of Human Development, Pennsylvania State University, USA.
relationship in the intensive care unit (ICU) may replace the traditional
nurse-patient relationship due to the patient's compromised state. As
a result, the nurse-family relationship becomes extremely important.
Nurses and families may develop a relationship in
which they work together to benefit the patient, or
an inadequate relationship may develop. In this study, strategies
used by nurses and families to either develop or inhibit the development
of the nurse-family relationship were identified. Using unstructured interviews
with ICU nurses and family members of ICU patients, categories of strategies
were identified and behaviors described. Nurses and families perceived
that they each displayed only positive behaviors yet identified inhibiting
behaviors of the other. Once the behaviors were shown to nurses as secondary
informants, they were able to identify with their negative behaviors. An
understanding of these strategies will help nurses to reevaluate their practice
and enhance their understanding of the behaviors of family members.
14: Crit Care
Med 1998 Feb;26(2):266-71
Crit Care Med.
ability to meet family needs in an intensive care unit.
Wilson M, Cavanaugh B, Bryden C, Gudmundson D, Moodley O. Division
of Critical Care, Royal University Hospital, University of Saskatchewan,
measure the ability to meet family needs in an intensive care unit (ICU).
DESIGN: Descriptive survey. SETTING: University hospital ICU. SUBJECTS: Ninety-nine
next of kin respondents and 16 secondary family respondents were recruited.
INTERVENTIONS: A modified Society of Critical Care Medicine Family Needs
Assessment instrument was used. MEASUREMENTS AND MAIN RESULTS: Demographic
variables included patient age, gender, diagnosis,
Acute Physiology and Chronic Health Evaluation
(APACHE) II score on admission, Therapeutic Intervention Scoring
System (TISS) score on the date of interview, cumulative TISS of the ICU on
the day of interview, number of patients in the ICU at time of interview, nurse/patient
ratio for the patient, average nurse/patient ratio of the entire unit,
day of the week of the interview, timing of the interview, number of ICU attending
physicians who cared for this patient (scheduled for a period of seven consecutive
days), number of nurses who cared for the patient, if a nurse was assigned
the same patient on two consecutive days worked, length of stay in the ICU,
and length of hospital stay. Demographic information concerning the family
member included gender, age, commuting time to the
hospital, visiting time in the hospital per day,
number in family group, relationship to the patient, ethnic
background, and education level. The additive score of all questions in the
needs assessment instrument was calculated and used as the dependent variable.
The independent variables were demographic information concerning patients,
ICU, and respondents. The model coefficient of determination (R2adj) was
0.20 with a p = .0079. Greater family dissatisfaction (i.e., higher score)
was present if there were more than two ICU
attendings per patient (p = .048), or if the same
nurse was not assigned on two consecutive days (p = .044). Family satisfaction
increased if the respondent was female (p = .006), if the patient had
a higher APACHE II score (p = .007), and if the patient's relationship
with the most significant family member was
brother/sister (p = .012). The family needs
instrument was reliable and demonstrated a high degree of concordance with
a second respondent in the same family surveyed.
CONCLUSIONS: Communication by the same provider was
important when measuring the ability of an ICU to meet family
needs. Instrument scores and the ability to meet family needs differed depending
on the gender and the relationship to the patient of the most significant
family member. We speculate that this instrument may be a useful adjunct
in assessing quality of critical care services provided
15: Am J Crit
Care 1998 Jan;7(1):30-6
experiences with decision making for incompetent patients in the ICU:
a qualitative study.
Michigan, Ann Arbor, USA.
Understanding the challenges faced by family members involved in decisions
about the use of life-sustaining treatment for incompetent patients in the
ICU is necessary for developing empirically based supportive
interventions. OBJECTIVES: To describe and explain
the experiences of family members who were involved
in decisions on behalf of their loved ones in order to promote understanding
of such experiences and to suggest areas for effective, supportive intervention.
METHODS: The grounded-theory method of qualitative research was used.
Data collection involved semistructured interviews of 17 persons who had been
involved in decisions about the use of life-sustaining treatment for a family
member in the ICU. RESULTS: Family members discussed the need to arrive at
a judgment of the patient's condition and to work with caregivers to have
the family member's decision about life-sustaining
treatment enacted. Data analysis suggests that
clinicians can best support family members by helping the members arrive
at a judgment about the patient's condition and treatment desires and by connecting
with the family members to ensure that treatment goals are mutual. Supporting
family members in this way helps them accept and go on in a positive way
after the experience. CONCLUSIONS: Family members of patients in the ICU
are willing and able to take responsibility for
decisions about the use of life-sustaining treatment
for their loved ones. The long-term acceptance of the experience
and the decisions made depends greatly on the interactions between the
family member who makes the decision and nurses and physicians in the clinical
16: Am J Crit
Care 1998 Jan;7(1):24-9
a structured communication program for family members of patients
in an ICU.
Hospital, Ill., USA.
ICUs, an essential component of caring for patients' families is providing
information about the patient's status. Nevertheless, interruptions by family
members requesting information create an additional burden for nursing staff.
OBJECTIVES: To test a structured communications program for family members
to determine whether the program would increase family members' satisfaction
with care, meet their needs for information better, and decrease disruption
for the ICU nursing staff caused by incoming telephone calls from patients'
family members. METHODS: The study used a two-group, pretest-posttest quasi-experimental
design. The sample consisted of 30 family members of patients in
a medical ICU (experimental group, n = 15; control group, n = 15). The intervention
consisted of a structured communication program consisting of three components:
(1) a discussion with a nurse approximately 24 hours after admission of
the patient, (2) an informational pamphlet given at the time of the discussion,
and (3) a daily telephone call from the nurse who was caring for the patient
that day. RESULTS: The number of incoming calls from family members was significantly
lower in the experimental group than in the control group. In the experimental
group, satisfaction with care increased significantly from pretest to
posttest, as did the members' perception of how well their information
needs were being met. CONCLUSIONS: The intervention
reduced the number of incoming calls from family
members, without compromising family members' satisfaction with
care or how well their information needs were met.
Crit Care Nurs 1997 Apr;13(2):111-8
informational, psychosocial and emotional needs of each ICU patient and
Intensive Care Unit, Southampton General Hospital, Shirley, UK.
of counselling skills and a review of current practice within a cardiothoracic
intensive care unit (ICU) have revealed the need for a nursing development
that will focus on meeting the informational, psychosocial and emotional
needs of patients and their families. The findings from a literature search
suggest that these needs are not always adequately met. Difficulties may be
encountered by patients and their families whilst trying to adjust to a
stay in the ICU, to transfer to the ward, and
following discharge home. Providing a client-driven
service that effectively meets these complex needs could be achieved
by developing a specialist role in intensive care nursing. The patients and
their families could be offered provision of information and supportive strategies
that extend from admission to the ICU, through transfer to a ward, and
beyond. The aim of the service would be to provide patient- and family-centred
continuity of care throughout the acute and rehabilitative stages of
the crisis (Turner 1992). The utilization of counselling skills could help
to facilitate the service, and help each client to
feel supported (Tschudin 1995, p 33).
18: Crit Care
Nurs Clin North Am 1997 Mar;9(1):107-14
making for incompetent patients in the ICU.
Michigan School of Nursing, Ann Arbor, USA.
Insight into the
experience of family-member decision making regarding treatment of
incompetent ICU patients can be gained through an exploration of the literature
regarding the ICU environment, normative bioethics, and the decision-making
process (see Fig. 1). The review of these relevant bodies of literature
has suggested the challenges faced by family members who are expected to
be involved in these difficult decisions. Nurses, by virtue of their professional
commitment to patient and family advocacy, have a responsibility to develop
empirically based knowledge that can be used to assist family members as they
face these challenges.
Crit Care Nurs 1997 Feb;13(1):12-6
Meeting needs of
family members of critically ill patients in a Spanish intensive
Zazpe C, Margall
MA, Otano C, Perochena MP, Asiain MC.
School of Nursing, University of Navarra, Pamplona, Spain.
study was carried out to ascertain how well the needs identified by
relatives of patients admitted to an intensive care unit (ICU) were met
and what measures could be implemented to improve
the care for patients' family members. Eighty-five
relatives of patients were studied using a needs questionnaire
as developed by Molter (1979) and modified in accordance with our setting,
with needs classified into four groups: information, confidence, comfort
of the ICU environment and emotional support. Family members were asked to
identify their needs and then to score how well each had been met on a 5-point
Likert scale. Results showed that the most frequently identified needs were
related to information and confidence. Overall, 94% of the needs of all groups
were found to be adequately met. Those needs which relatives felt were least
well met were related to certain aspects of information and the comfort of
the ICU environment. The conclusions based on the
results are that more than one channel of
communication should be used to transmit the desired information, and that
hospital managements should be informed of the importance that back-up services
(waiting rooms, restaurants, etc.) have for the relatives of patients.
20: Pediatr Nurs
The value of a
family-centered approach in the NICU and PICU: one family's perspective.
Intensive Care, Bethesda, MD 20824-1043, USA.
family-centered approach in the NICU and PICU can make a tremendous
difference to parents, providing the basis for
systematic support. One family's story of a high-risk
twin pregnancy, long hospitalizations, and ultimately the deaths of both
daughters illustrates the kind of support system that families need. Positive
examples from their experiences show the value of a family-centered approach,
while negative examples show how difficult the intensive care environment
can be for parents when family-centered care is missing. Parents and staff
working together in partnership can improve the intensive care experience for