Caregiver stress

Caregiver Stress
Review of the Caregiver Stress Theory to analyze stress
among parents of infants in the NICU
Jessica Amaya BSN RN
Ashley Davis, BSN RN
Christiana Femano, BSN, RN

Introduction
• Having an infant in the NICU can be a highly emotional experience
causing physical, emotional and psychological distress on the
parents and the family. This module will discuss the Caregiver
Stress Theory and utilize its key elements to enable NICU nurses
and advanced practice clinicians to better predict the magnitude
of stress the parents of their patients are trying to cope with.

Goal:
By the end of this module you will be able to
utilize the Theory of Caregiver Stress to
better predict parental stress and implement
appropriate evidenced based interventions to
reduce stress and concurrently strengthen
the parents perception of family centered
care.

Objectives:
1. Define parental stress and identify factors in the NICU setting that
contribute to increased parental stress
2. Identify the role NICU nurses and Advanced Practice Clinicians play in
reducing parental stress in the NICU
3. Describe the key elements of the Caregiver Stress Theory and how they
relate to parental stress in the NICU
4. Utilize the nursing process to identify nursing interventions which are
appropriate in reducing parental stress
5. Evaluate comprehension of the module by completing a relevant Case
Study

Magnitude of the Problem
• Prematurity
• Difficult Delivery
• Breathing Problems
• Infections
• Birth Defects

Magnitude of Problem: Prematurity
• Prematurity:
– The CDC states that 12.3% of infants are born prematurely (prior to 37 weeks
gestation) each year in the United States
– Half of a million preterm infants born each year.
– “Prematurity is the leading cause of death among black infants and the most
common cause of neonatal mortality overall” (March of Dimes.com).
– Prematurity is associated with increased risk of cardiovascular, pulmonary and renal
problems.
– Average length of stay: 25 days
– Estimated cost $30,527
Chertok, I., McCrone, S., Parker, D., Leslie, N. (2014) Review of Interventions to Reduce Stress Among Mothers of Infants
in the NICU Advances in Neonatal Care Vol 14, NO.1 pp 30-37

Statement of the Problem/Significance
• Stress
– “Parents of NICU infants experience stress related to feelings of hopelessness,
exclusion, and alienation, and lack of sufficient knowledge regarding parenting and
interacting with their infants in the NICU”
– “Premature Parenting”
– A women’s experience of a “normal pregnancy” and birth with a healthy infant are not
realized.
– “The full term duration of pregnancy allows time for emotional adaptation to the dynamic
changes that are unfolding during pregnancy and to parenting”
– Miles and colleagues study
– Examined stress of parents with children in ICU settings
– 3 sources of stress
– Personal/family, situational, environmental (lights, monitors, tubes attached to the baby)
– Other studies
– “loss of the maternal role was the greatest source of stress for new mothers”
Chertok, I., McCrone, S., Parker, D., Leslie, N. (2014) Review of Interventions to Reduce Stress Among Mothers of
Infants in the NICU Advances in Neonatal Care Vol 14, NO.1 pp 30-37

Short Term Consequences
– Mothers of hospitalized infants in the NICU have reported sleeping
less than 7 hours per night, as well as increased levels of fatigue
and reduced well-being (Busse et. al, 2013)
– “Sleep is a particular concern given the prevalence of post partum
sleep problems (57.7%) and the complex relationship between
postpartum sleep and depression” (Busse et. al, 2013)
Busse, M., Stromgren, K., Thorngate, L., Thomas, K. (2013) Parents’ Response to Stress in the
Neonatal Intensive Care Unit Crit Care Nurse Vol 3 No. 4 52-59

Long Term Consequences: PTSD and
Depression
• Stress experienced by parents whose infant is hospitalized in the NICU is
strongly associated with anxiety, fatigue, sleep disruption and
depression
• “Research suggests that parents’ responses are not limited to the period
of hospitalization and that the NICU experience is association with
disorders such as acute stress disorder and post traumatic stress
disorder” (Busse et. al, 2013)
• 15% of mothers and 8% of father demonstrated evidence of PTSD when
evaluated 30 days after their infants NICU admission. Mother of preterm
infants demonstrate significant stress responses 6 months after the
infants’ expected due date
• Mother continue to experience distress and evidenced alterations in
parenting 24 months after the infant’s due date (Busse et. al, 2013)
Bergstrom, E-B., Wallin. L., Thomson, G., Flacking, R. (2012) Postpartum depression in mothers of infants cared
for in a Neonatal Intensive Care Unit- Incidence and associated factors Journal of Neonatal Nursing (2012) 18,
143-151
Busse, M., Stromgren, K., Thorngate, L., Thomas, K. (2013) Parents’ Response to Stress in the Neonatal
Intensive Care Unit Crit Care Nurse Vol 3 No. 4 52-59

Long Term Consequences- Post Partum
Depression
• Post-partum depression
– The most common complication of childbirth
– Peak prevalence: 3 months post partum but onset can occur up to 1 year after
childbirth
– 19% of mothers of “normal, healthy babies” may experience symptoms of
depression in the first three months post partum
– 40% of the mothers of infants born before 32 weeks gestation experienced PPD
at 1 month Postpartum
– “High levels of stress experienced following a premature birth and subsequent
hospitalization constitute an increased risk for PPD and there is a higher
incidence of ppd among mothers’ whose pre-term infants are cared for in a
neonatal unit”
– Yurdakul and colleagues found that mothers of NICU infants had higher early
post partum depression scores and anxiety scores. Factors to exacerbate
parental stress levels include ongoing infant illness, separation from their infants
and a perceived lack of support
Bergstrom, E-B., Wallin. L., Thomson, G., Flacking, R. (2012) Postpartum depression in mothers of infants cared for in a Neonatal
Intensive Care Unit- Incidence and associated factors Journal of Neonatal Nursing (2012) 18, 143-151

Nursing Implications: In the hospital
– Post Partum
– Assessment of depression in Post Partum Unit
– Symptoms
– Emotional/Psychological: Uncontrollable mood swings, fear of being alone, feelings of
hopelessness or being overwhelmed, a fear of hurting oneself, one’s partner or the
baby; loss of energy or motivation and withdrawal and isolation from friends and
family.
– Physical: sleep disruption, fatigue, loss of appetite, tremors, chest pain and headache
– PPD is linked to adverse maternal and infant outcomes and the identification of
risk as early as possible
Bergstrom, E-B., Wallin. L., Thomson, G., Flacking, R. (2012) Postpartum depression in mothers of infants cared for in a Neonatal
Intensive Care Unit- Incidence and associated factors Journal of Neonatal Nursing (2012) 18, 143-151

Nursing Implications: In the hospital
• Breastfeeding
– “Recent evidence suggests that the impact of human milk on
improving infant health outcomes and reducing the risk of
prematurity-specific morbidities appears to be linked to
specific critical exposure periods in the post-birth period
during which the exclusive use of human milk and the
avoidance of commercial formula may be most important.29
Meier, P., Engstrom, J.,Bruns, N.(2010) Improving the Use of Human Milk During and After the
NICU Stay Clin Perinatol. 37 (1): 217-245”

Nursing implications: In the clinic
• Women who are thought to have PPD are thought to underreport
their infants illness and behavior as they are experiencing feelings
of shame and doubt.
– Maternal depression has been associated with impairments in the infants
developmental outcomes such as cognitive impairments, behavioral
problems, and low positive effect
– Studies revealed that infants of depressed parents were 2-5 times more likely
to develop behavioral problems than non-depressed parents
• EARY IDENTIFICATION AND TREATMENT IS KEY!!
Bergstrom, E-B., Wallin. L., Thomson, G., Flacking, R. (2012) Postpartum depression in mothers of infants cared for in
a Neonatal Intensive Care Unit- Incidence and associated factors Journal of Neonatal Nursing (2012) 18, 143-151

Nursing Implications: Conclusion
• “Nurses are recognized as the best teachers, guardians and
facilitators in the NICU setting. Nurses provide emotional support
to parents, promote family presence and participation in the NICU
and can create a welcoming environment for families” (Manning,
2012)
Manning, A (2012) The NICU Experience J Perinat Neonat Nurs Volume 26 Number4, 353-357

Goal:
By the end of this module you will be able to
utilize the Theory of Caregiver Stress to
better predict parental stress and implement
appropriate evidenced based interventions to
reduce stress and concurrently increase the
parents perception of family centered care.

Caregiver Stress Theory (CST)
• Derived from Roy Adaptation Model
• Used as a basis in understanding the relationships among
caregivers and the stress faced when caring for a chronically ill
relative
• “To predict the caregiver stress and its outcomes from
demographic characteristics, objective burden in caregiving,
stressful life events, social support and social roles (Tsai, 2003)
Tsai, P. A (2003) Middle-Range Theory of Caregiver Stress Nursing Science Quarterly 16:137

CST: Assumptions
1. Caregivers can respond to environmental change
2. Caregivers’ perception determines how caregivers respond to environmental
stimuli
3. Caregivers’ adaptation is a function of their environmental stimuli and
adaptation level
4. Caregivers’ effectors-for example, physical function, self-esteem/mastery,
role enjoyment and marital satisfaction-are results of chronic caregiving.

Caregiver Stress Theory
• Input
– Focal stimuli
– Contextual stimuli
– Residual stimuli
• Control Process
• Output

• Input
– Focal Stimuli
– Objective burden: the duties or tasks associated with caregiving of a person with
chronic disease (hours of care and care arrangements)
– Contextual Stimuli
– Stressful life events
– Social Support
– Social Role
– Residual Stimuli
– Race, age, gender, type of relationship
– Cognitive Approach
– Stress is determined by an individuals cognitive appraisal which is influenced by factors
such as beliefs, values, and commitments that are shaped by culture and influences the
expression of personal beliefs and values (Tsai, 2003)

• Input
• Control Process
• Output

Caregiver Stress Theory: Control Process
• The causal path between environmental stimuli and adaptive modes
• The caregivers cognitive appraisal of stress related to caring for a
chronically ill relative or friend.
• The CST hypothesizes that the previously mentioned stimuli produce
adaptation responses in four adapted modes through perceived
caregiver stress, in the absence of stress these stimuli will have no
influence on the caregiver’s adaptive modes.
Tsai, P. A (2003) Middle-Range Theory of Caregiver Stress Nursing Science Quarterly
16:137

Caregiver Stress Theory: Output (Adaptive
Modes)
• The combined effects of environmental stimuli-focal, contextual and residual
• Physiological
– Oxygenation, nutrition, elimination, activity and rest, protection, the senses, fluid and
electrolytes, neurological and endocrine functions
• Self-Concept
– Self-esteem
– Perception of self worth; how important one feels in relationship to others
– Mastery
– Perception of caregiver’s ability to handle or control things in life
– Role Function:
– Enjoyment of the role is perceived by caregiver burden
– Ex. Decision to institutionalize a demented relative
• Interdependence:
– Relationship with significant others and social system.

Caregiver Stress Theory Parental Stress in NICU
“The Theory of Caregiver Stress was
implemented to use as a basis in
understanding the relationships
among caregivers and the stress
faced when caring for a chronically ill
relative” (Tsai, 2003)
“Chronic conditions and childhood
cancers may be comparable with
prematurity and the NICU
hospitalization” (Manning, 2012)
Critical Concepts/Elements

Theory of Caregiver Stress Parental Stress in the NICU
“Significant others are the most important
person in one’s life: they are those who are
loved, respected and valued. Marital
satisfaction is used to represent the
caregiver’s interdependence mode. High
level of satisfaction- adaptive. Chronic
caregiving negatively influences spouse-
caregiver’s marital satisfaction” (Tsai, 2003)
“The NICU experience may limit parents’
communication with each other. The infants
hospitalization may last months and parents
might be separated from each other for a
great portion of this period” (Manning,
2012)
“One study suggests that the unresolved
parenting and spousal problems developed
in the NICU may persist after discharge and
can have a lasting effect on family function
and daily life, including increased stress and
depressive symptoms and difficult in role
adaptation” (Manning, 2012)

Caregiver Stress Theory Parental Stress in NICU
“Caregivers with more social
roles are expected to
experience less stress than
caregivers with fewer social
roles” (Tsai, 2003)
“The literature shows that
NICU parents experience
anxiety, stress, role strain, and
depression similar to that of
parents of a child with a
chronic condition or cancer”
(Manning, 2012)

Caregiver Stress Theory: Depression
“Depression is likely to be the first and most readily aroused
psychological outcome of the stress process and it is an enduring
psychological outcome for caregivers”.
“CST proposes that both depression and perceived caregiver stress
are coping mechanisms and that depression is the emotional
portion of the cognator subsystem and the immediate outcome of
caregiver stress”.

Evaluation of Theory
Please go to the WIKI to review an in depth analysis of the Theory
using the appropriate evaluation criteria.

Rationale
• Utilization of this theory provides us with an anticipatory guideline on
which to predict factors which can increase parental stress and
anticipate how effectively parents can adapt.
• Utilizing various character traits such as age, gender, race and marital
status can help nurses predict how effective a parent may be in dealing
with stress
• Realizing how critical social support is for the adaptation process will
enable the nursing staff to provide the families with education and
resources inside and outside of the hospital
• Involving the parents in family centered care will enable the nursing staff
to provide the parents with emotional support by empowering them
through knowledge and retaining their social role

Solution to the Problem
• Utilize the nursing process
– Assessment
– Diagnosis
– Planning
– Implementation
– Evaluation

Solution: Assessment
• Input
– Identify the objective burden
– How involved is the parent in caring for their baby
– What aspects of care are particularly challenging (fear of holding a baby in an
isolette, inexperience of gastric tubes, ventilators)
– How does this NICU admission affect their daily lives
– Time travel to the hospital
– Time lost from work
– Less time with other children, family members
– Expense (parking, cafeteria meals, etc)

– Contextual
– Additional stressors in their life
– Recovering from a C-Section (fever, post operative complications)
– Having multiple babies (one baby in nursery, one in NICU)
– Acute Stressor
– Residual
– Race, age, gender
– A young teenage mom with little to no social support
– An older mother who feels that she is unable to adapt to a sick baby
– A father torn between visiting his baby in the NICU and his wife in post partum

• Control Process:
– Depression (Post-Partum)
– Educate nurses and staff on key signs of post partum depression
– Coping
– Failed coping mechanisms
– Drug addict, anxiety, past medical history
• Output: Adaptation
– Most important area of assessment
– Physical
– Weight loss, fatigue, not producing breast milk, anhedonia
– Self Worth
– “I am a horrible mother for not being at her side 24-7”
– Mastery
– “I feel like my world is spinning out of control”
– “I can not handle being here and having to pump breast milk its too overwhelming”
– Interdependence
– Assess how well the parents interact with each other

Solution: Diagnosis
• Utilize the assessment data gathered and interpret the findings
• Educate the staff on how to identify post partum depression and
male depression
• Enforce interdisciplinary communication among the teams so that
post-partum department, the nursery, the pediatrician and the
OBGYN are aware and involved in the families care
• Most important: Utilize family centered care to provide the
families with valuable information. Also a good time to assess
both parents in the context of their baby
– “The literature shows that properly implemented FCC in the NICU decreases
parents stress, anxiety, and depressive symptoms and increases parents’
confidence in caring for their child in the hospital and at discharge”
(Manning, 2012)

Solution: Plan/Implement
• Focal stimuli/Environmental stimuli/Residual
– Educate parents on all of the equipment being used on the baby. Make sure to acknowledge cognitive age vs.
emotional age
– Decrease lights, bells, alarms and interference to decrease stimulation
– Provide parking passes, allow family members to visit, provide appropriate overnight accommodations
– Provide social support in the form of social work, home health nurse, therapists, support groups, lactation groups,
mommy and me clubs
– Be Present
• Control Process
– Document appropriately any signs of post partum depression or any unusual behavior elicited by mom or dad.
– Be assertive if it is believed that the baby is at risk at time of discharge
• Output (Adaptation)
– Provide cafeteria coupons and refreshments for parents
– Encourage parents to take time for themselves (shower, dinner, time with other children) provide them with a phone
number to call if they have questions or want to check in on the status of their baby
– Allow them to visit at any time of the day
– Do NOT send them out during change of shift report
• “It is hypothesized that by decreasing the negative psychological effects of the NICU and increasing the
confidence of both parents in caring for their child, the risk of marital conflict and dissolution may be
decreased” (Manning, 2012)

Solution: Evaluate
• At the beginning of each shift the nurse should follow up with the parents and inquire about
their perceived stress. A standardized Likert rating scale and specific documentation
section should be added to their charting. This should be completed during family
centered care rounds.
• Follow up with parents by phone a couple of days post discharge to see how they are
managing
• Provide a survey in the mail 2-3 weeks after discharge to evaluate how the parents
perceived their stress and how effective the NICU staff was at helping to alleviate some of
their stress
– Examples
– How would you rate the overall environment of the unit. Did this help to increase or decrease feelings of
stress and anxiety?
– Did the nurses speak to you in a supportive, compassionate manner that was easy to understand? Did they
involve you in all aspects of your child’s care and make you feel like a member of the healthcare team? If so,
did this help to decrease feelings of stress and anxiety?

Solution: Summary
• The theory of caregiver stress provides us with a straightforward
model to utilize as a framework for interpreting the stress of
parents in the NICU
• Understanding the dynamics that fall into caregiver stress is an
important tool in further assessing how well parents cope with
NICU stays.
• As the theory states, early identification of stressful factors and
proper management will result in healthy adaptation responses
which will ultimately lead to more efficient parenting and effective
care.

Problems with the Intervention
• “Women caregivers seem to suffer more emotional distress than
men, as well as poorer mental health” (Tsai, 2003)
• “Women are likely to assume a more caregiver role and involved
more in caregiving and spend more time in caregiving than men
do. Women will experience a higher level of stress then men
caregivers” (Tsai, 2003)
• “The type of relationship between caregiver and care recipient is
not significantly related to caregiver burden. The theory of
caregiver stress only proposed that the relationship between
caregiver and care receiver might influence the caregiver’s stress,
without specifying the direction”(Tsai, 2003)

Limitations
• The theory is based on the belief that caretaking is for a
chronically ill relative
• An abundance of the literature found was in relationship to
caregivers (adults) providing care for an older family member.
• No research of applying this theory to parents in an acute care
setting
• Little to no empirical testing was completed on this theory
• It seems implausible to make hypotheses on gender, race and
ethnicity without empirical evidence

Case Study
• Review the case study and identify potential areas of stress.
Anticipate Sara’s coping mechanisms and if you feel that depression
is a potential risk factor. Identify interventions that could be
implemented to help.
Tabitha is a 1 day old admitted to the NICU for Neonatal Abstinence
Syndrome related to intrauterine exposure to Methadone. Sara, the
mother, is a 16 year old female who had a 12 month history of IVDA,
however started a methadone rehabilitation clinic when she found out
she was pregnant. Sara has no local family except for a sister who
lives two and half hours away. She is currently unemployed and uses
public transportation to get to the hospital and her methadone
appointments. She states, “I am ready to turn my life around and
start being the mother I need to be for this baby.” Her plan is to reach
out to her sister and ask her help.

Video Clips
• Saving Babies: Putting Hope in
Place; NICU Family Support

Caregiver stress

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Editor's Notes