caregiver stress

Caregiver StressReview of the Caregiver Stress Theory to analyze stress among parents of infants in the NICU

Jessica Amaya BSN RNAshley Davis, BSN RNChristiana 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, 143-151Busse, 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


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”

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2859690/?report=reader#R29

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!!


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: Assumptions1. 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.



• Input

• Control Process

•Output

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 wasimplemented 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 infantshospitalization 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)

Manning, A (2012) The NICU Experience J Perinat Neonat Nurs Volume 26 Number4, 353-357Tsai, P. A (2003) Middle-Range Theory of Caregiver Stress Nursing Science Quarterly 16:137


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)

Manning, A (2012) The NICU Experience J Perinat Neonat Nurs Volume 26 Number4, 353-357Tsai, P. A (2003) Middle-Range Theory of Caregiver Stress Nursing Science Quarterly 16:137

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)

Solution: Assessment– 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

Solution: Assessment• 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

http://youtu.be/e4_lMYnrcos

caregiver stress

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