SELF CARE NEEDS OF DEPRESSION CAREGIVERS
Running head: SELF CARE NEEDS FOR CAREGIVERS OF DEPRESSION
SELF-CARE NEEDS FOR CARE GIVERS OF DEPRESSION: MANAGEMENT AND
PREVENTION OF CARE GIVER BURNOUT
A thesis submitted in partial fulfillment of the requirements for the degree of
MASTERS OF NURSING
by
Mary Ann G. Palmer
WASHINGTON STATE UNIVERSITY - SPOKANE, WA
College of Nursing
April 2014
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SELF CARE NEEDS OF DEPRESSION CAREGIVERS
To the Faculty of Washington State University:
The members of the Committee appointed to examine the master’s project of
____Mary Ann G. Palmer ____________find it satisfactory and recommend that it be accepted.
__________________________________________
Mel Haberman, PhD, RN, FAAN, Chair
__________________________________________
Anne Mason DNP, ARNP, PMHNP-BC
__________________________________________
Sandy Carollo PhD, ARNP, FNP
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SELF CARE NEEDS OF DEPRESSION CAREGIVERS
Self-Care Needs of Family Caregivers of Depression: Management
and Prevention of Caregiver Burnout
Abstract
By Mary Ann G. Palmer, RN, BSN
Washington State University
April 2014
Chair: Mel Haberman
Submitting to the Journal of the American Academy of Nurse Practitioners
Depression is one of the common mental disorders, affecting 6.6% of adult Americans
yearly, yet over 80% are not treated (Center of Disease Control & Prevention [CDC], 2010).
Related to depression, about 30,000 Americans commit suicide each year, and about 500,000
make suicide attempts that warrant emergency care (CDC, 2010; Nicholas & Golden 2001).
Depression varies in severity and demography, and presents a significant health concern not only
in America but throughout the world. The onset is gradual, episodic in nature, and clinically
manifest at adulthood. Depressed persons are usually cared for by family members at home
(National Institute of Mental Health [NIMH], 2008). Therefore, supporting family caregivers is
crucial for the survival and recovery of this group of patients.
Family caregivers are at risk of developing behavioral and health problems due to the
burden of caregiving (Highet et al., 2005). Understanding the circumstances that influence
caregiver’s ability to care for depressed members will provide perspectives on treating
depression, improve the caregivers' quality of life, prevent delay in treatment, and minimize the
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SELF CARE NEEDS OF DEPRESSION CAREGIVERS
frequent relapses among depressed persons (Wijngaarden et al., 2009). This paper reviews the
current literature on physical, psychological, and social stressors that challenge the caregiver's
ability to provide care to a family member with depression and presents the current evidence on
prevention and management of caregiver burnout.
Key Words: caregiver, family care giver, informal caregivers, carer, stress, burnout, burden,
anxiety, depression treatment, bipolar, depression, mental health disorders, caregiver burden,
caregiver burnout, chronic illness and depression, caregivers and depressive symptoms, care
giving risk factors, care giving burden, and evidence based practice on stress reduction
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SELF CARE NEEDS OF DEPRESSION CAREGIVERS
TABLE OF CONTENTS
Page
ABSTRACT............................................................................................................................... iii
STATEMENT OF PROBLEM....................................................................................................1
LITERATURE RESEARCH STRATEGIES.............................................................................. 3
THEORETICAL FRAMEWORK............................................................................................... 4
LITERATURE REVIEW............................................................................................................ 4
STRESSOR OF CAREGIVER BURNOUT…………………………………………... 4
CAREGIVERS’ PHYSIOLOGICAL RESPONSES....................................................... 6
CAREGIVERS’ PSYCHOLOGICAL RESPONSES..................................................... 7
CAREGIVERS’ SOCIAL RESPONSES TO LIFE........................................................ 8
MANAGEMENT AND PREVENTION……………………………………………… 9
SIGNIFICANCE TO ADVANCED NURSING PRACTICE.....................................................11
RECOMMENDATION FOR RESEARCH................................................................................ 12
REFERENCES............................................................................................................................ 14
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SELF CARE NEEDS OF DEPRESSION CAREGIVERS
Self-Care Needs for Care Givers of Depression: Management
and Prevention of Care Giver Burnout
Depression is a disorder characterized by severe negative changes in mood, thinking, and
behavior that affect a person's daily life, functioning, and causes distress for both the person with
depression and his or her caregiver (McCance & Huether, 2006; McDowell, 2006). According
to Center of Disease Control & Prevention (CDC) (2010), depression is the leading cause of
disability for Americans between age of 15 and 44. About 17 million adults Americans suffer
from depression yearly and the clinical manifestation is episodic, unpredictable, and disabling in
nature (National Institute of Mental Health [NIMH], 2010). Depression occurs in various forms
and is more common in women than men, co-exists with many medical conditions, and
contributes to about 30,000 yearly suicides in America (NIMH, 2010). Onset of depressive
symptoms usually starts at adulthood and depressed persons are usually cared for at their home
by their spouses or family members (NIMH, 2010).
A family caregiver is defined as a friend or relative who provides unpaid assistance to a
person with chronic or disabling conditions (Family Caregiver Alliance 2006; Highet,
Thompson, & McNair, 2005). For some caregivers, caring for a person with depression is an
obligation or fulfillment of personal commitment, but the associated burden of physical and
psychosocial instability is a threat to caregivers’ well-being (Naiditch et al., 2006). Caregivers
of depressed persons are faced with unavoidable stress and burden and often report symptoms
similar to the depressed person being cared for (Benazon & Coyne, 2000).
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SELF CARE NEEDS OF DEPRESSION CAREGIVERS
Caregiver burden is defined as the "physical, emotional, and social impact of the stress of
caregiving" (Philips et al., 2009, p. 336). The high caregiving demand negatively influences
healthy practices, restriction in social activities, decreases family income, and strains
relationships (Philips et al., 2009; Robinson et al., 2009). The negative influences on the
caregiver’s health stems from abandonment of self-care habits and preventive care practices due
to the burden of caregiving. This places caregivers at risk for developing heart diseases and other
health problems (Kanel et. al., 2006).
In America, more than 34 million unpaid caregivers provide care for persons with
disabilities at home, 83% are family caregivers, and about 21% of American households are
negatively impacted by the caregiving role (CDC, 2011). The caregivers’ health risk survey by
Naiditch et al. (2006) found 53% reported of declining health as the outcome of caregiving role,
90% reported increasing stress, and 69% reported restriction of social activities. Other findings
indicated 10% misused alcohol or prescription drugs, 82% reported sleeping was worse, 63%
reported their eating habits were worse, and 58% reported their exercising had been reduced to
include 51% reported taking more medications as the results of providing the caregiving tasks.
Kanel et al. (2006) indicated the high risk of developing cardiovascular disorders in older
caregivers as one of the physiologic consequences of sleep deprivation related to chronic
exposure to stress.
The research literature is replete with findings of higher prevalence and incidence of
psychiatric symptoms in caregivers. Steele, Maruyama, & Galynker, (2010) analysis of
caregivers of depressed bipolar persons found 46% reported depression and anxiety and up to
32.4% reported the use of mental health services. Dealing with the negative symptoms of
depression and seeing their loved ones suffer from depression are disturbing facets of caregiving
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that contribute to greater burden and disruption in family functioning (Naiditch et al., 2006).
The caregiver’s stressful role causes feelings of anger, sadness, exhaustion, and guilt including
stress, depression, and anxiety (Highet, Thompson, & McNair, 2005). Often caregivers sacrifice
their own physical and emotional needs in an effort to provide the best possible care for their
depressed loved ones. Even the most capable caregivers can be negatively impacted by the
physical and emotional strain involved in caring for depressed persons at home (Naiditch et al.,
2006).
To maintain the well-being of caregiver and the depressed person, the caregiving role
must be recognized and supported by health care providers due to the significant strain
associated with the role. For example, the family caregiver’s level of expressed emotion has
been positively associated with the prolonged recovery including frequency of relapses,
exacerbation of depression, and duration of depressive symptoms (Milklowitz, 2007). On the
other hand, respite care services or support groups eased the burden of caregiving (Hartman et
al., 2012). The purpose of this paper is to examine the evidence pertaining to the stressors that
negatively impact the caregiver's physiologic, psychological, and social aspects of life and to
summarize evidence-based practices for the prevention and management of caregiver burnout.
The population of interest is male and female caregivers 18 years of age and older who care for
persons with depression or depression with co-morbid chronic conditions.
Literature Search Strategies
Initially, a general internet search was conducted using the Google search engine using
the words and phrases: care giver, family care giver, carer, stress, burden, depression, bipolar,
mental health disorders, care giving risk factors, care give burden, and evidenced-based practice
on stress reduction. The research was narrowed using the multiple database searches: CINAHL,;
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PubMed,; and PsychINFO,; Cochrane,; and ProQuest. Seventy articles were identified as the
most relevant to the topic of the paper. These were narrowed to 21 scholarly articles and four
books. These materials were organized into the following categories: (a) stressors of caregiver
burnout (3 articles), (b) caregivers’ physiologic responses (4 articles), (c) caregivers’
psychological responses (5 articles), (d) caregivers’ social responses to life (5 articles), and (c)
management and prevention of caregiver burnout (4 articles). These categories provide the
organizational framework for the literature review
Theoretical Framework
Neuman's System Model is the theoretical framework that guides this paper. Betty
Neumann developed the theory in 1972 based on human reactions to stress. The model describes
the importance of balancing the human dynamic through the use of the nursing process for
collection of data and formulation of goals (McEwen & Wills, 2011). The core concept of the
model is the assumption of "prevention as intervention." Neuman’s model suggests that the
causes of stress can be remedied through prevention, thus maintaining the optimal functioning of
human beings (McEwen & Wills, 2011).
In this paper, the goal is to discover the activities and interventions that best support the
well-being of caregivers who care for depressed persons so that caregivers can continue to
perform the role. Primary prevention includes the understanding of depression along with its
treatment and management, early recognition of signs and symptoms of burnout, and promotion
of self-seeking behavior to include counseling and effective coping skills for stress reduction.
Secondary prevention focuses on the reduction of care giving tasks through the use of
community resources such as support groups, respite care, home care services, skilled nursing
services, or adult day centers for relief of direct care giving tasks. Promoting caregivers’ well4
SELF CARE NEEDS OF DEPRESSION CAREGIVERS
being improves the quality of life for both caregivers and the depressed persons and prevents
caregiver burnout.
Literature Review
Stressors of Caregiver Burnout
The major stressors that cause caregiving burden for depressed person are the negative
symptoms of depression such as, feeling of sadness, anxiety, agitation, guilt, irritability, loss of
interest or pleasure in normal activities, sleep disturbances, lack of energy, feeling worthlessness,
changes in appetite or weight, difficulty thinking or concentrating, frequent thoughts of death,
suicide attempts, and unexplained physical problems (Diagnostic and Statistical Manual of
Mental Disorders, Fifth Edition [DSM-5], 2013). These episodic symptoms occur every day for
at least 2 weeks or longer and create significant distress or impairment in social, occupational,
and other important areas of a person’s daily functionality (DSM-5, 2013; Perlick et al., 2007).
Benazon and Coyne (2000) found the depressed persons negative behaviors were
significantly correlated to caregiver burden and marital functioning (r = .49, p = < .05). The
subjective burdens were the depressed person’s feeling worthlessness, endless constant worrying,
and lack of energy to include the possibility of re-occurrence and spouse’s emotional strain. The
finding indicated that living with a depressed person is associated with caregiver burdens and
this should be taken seriously when treating the depression. In addition, Wijngaarden et al.
(2009) discussed that the lack of energy, lack emotion, withdrawn mood, and sexual impairment
places strain on marital relationship, which leads to higher level of caregiving consequences and
poor family function.
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SELF CARE NEEDS OF DEPRESSION CAREGIVERS
Furthermore, Perlick et al. (2007) qualitative study of 500 caregivers of depressed bipolar
persons found 89% of caregiving burden was related to negative behaviors, 52% role
dysfunction, and 61% disruption of household routine. This higher level of burden resulted in
more medical conditions (M = 1.06, SD = 1.25, p = .014), depressive symptoms (M = 37.44, SD
= 2, p = .001), health risk behavior (M =1.65, SD = 0.47, p = .001) or usage of health care
services (M = 1.63, SD =1.48, p = .013), and less social support (M =14.12, SD = 2.20, p =
0.65) including higher financial cost (M = 1,026.0, SD = 1570.5, p = .002). Therefore, clinical
interventions that focused on caregivers' burden would improve the health of caregivers and
depressed persons (Shimazu et al., 2011).
Caregivers’ Physical Responses
Chronic exposure to stress causes fatigue and deterioration of caregivers' well-being,
neglect of self-care habits, and preventive health care practices (Naiditch et al., 2006).
Caregivers were overwhelmed and felt like they were losing their lives due to the difficulties of
balancing the relationships, adapting to the role, and advocating care with health care
professionals (Stjernsward & Ostman, 2008). The caregiving role created stress, restriction of
social activities, and the isolation from family members and friends intensified the emotional
stress leading to neglect of self-care habits such as, healthy sleep, exercise, and diet placing them
at risk of developing serious illnesses (Kanel et al., 2006). The health consequences were also
reported in qualitative and quantitative study by Naiditch et al. (2006) in a sample of 528
caregivers whose health declined as a result of providing care to depressed persons with multiple
chronic diseases. Fatigue, stress, pain, and depression were the most common reported
symptoms. About 87% of caregivers reported worsening health problems such as high blood
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pressure, headaches, unstable weight, shortness of breath, digestive problems, and loss of
appetite.
Kanel et al. (2006) focused on the link between lack of sleep and the development of
heart disease or stroke in 113 caregivers caring for depressed persons with Alzheimer’s disease.
The investigators’ found that insomnia was statistically significantly associated with higher
serum level of plasma IL-6 (p =.01) and D-dimer (p = .01). These immune variables were
associated with the development of cardiovascular disorders in older caregivers and were the
physiologic results of stress. Furthermore, in the random interview by Haley et al. (2009) in 716
caregivers of depressed disabled persons, African-American male caregivers scored 23% higher
than the predicted stroke risk score model utilizing the Framingham Stroke Risk tool (F [2,677]
= 3.17, p=0.04). The above evidence indicates that the caregiving role for depressed persons is
stressful and burdensome; therefore, more should be done to support the caregivers as they cope
with stressors so that becoming sick can be prevented.
Caregivers’ Psychological Responses
The literature reviewed by Steele, Maruyama, & Galynker, (2010) found that 46 % of
caregivers experienced depression and anxiety as the outcome of their strained role and up to
32.4% utilized mental health services. Clearly, the caregivers need interventions that target
psychiatric symptoms. Also, Perlick et al. (2005) qualitative study in 264 caregivers showed
that caregiver burden continued to be the significant predictor of mental health service use (OR =
13.53, p = < 0.001) even after controlling the socio-demographic, medical conditions, and
symptoms of anxiety and depression in caregivers. Up to 72% of caregivers used primary care
service (OR = 1.72, p = 0.02). The significant predictor was caregivers’ untreated symptoms of
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anxiety and depression as the outcome of caregiving to depressed bipolar patients. In addition,
Philips et al. (2009) cross-sectional and prospective observational study in 393 caregivers using
the Hospital Anxiety Scale (HADS) found significant link between caregiving strain (M = 3.34,
SD = 2.4, p = 001) and caregiving burden (M = 3.12, SD = 25.6, p = .002), which were also
positively associated to depression (M = 4.0, SD = 2.90, p = .01). The authors further explained
that caregivers experienced higher caregiving strain and burden and reported worsening of
symptoms of depression even after adjustment of socio-demographic risk factors.
Smith et al. (2011) longitudinal study in 310 informal caregivers of depressed elderly
with multiple chronic illnesses indicated that increase in caregivers’ stressors (M = 77. 9, SD =
8.7, p = <. 01) were related to caregiver depressive symptoms (M = 14.4, SD = 11.5, p = < .01).
Therefore, increased caregivers depression and decrease in respectful behavior predicted a
potential harmful behavior (p = < .001) in caregivers. This significant finding indicates that
changes in caregivers’ stressors, depressive symptoms, and disrespectful behavior may indicate
that interventions are needed in order to prevent poor quality of care. On the other hand, Highet,
Thompson, and McNair (2005) qualitative study discovered that failure to associate the distinct
psychological, behavioral, and physiological symptoms of depression resulted in the caregivers'
feeling of helplessness, confusion, and guilt. The limitation of this qualitative study was the
small population (N = 37). The finding suggested interventions that focus on education to
enhance the recognition and awareness of depression and its treatments, reduces the caregivers'
psychological strain, and improves caregivers' quality of life as well as the depressed persons.
Caregivers’ Social Responses to Life
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Wijngaarden et al. (2009) qualitative study conducted in 252 caregivers found that
caregivers caring for depressed persons were themselves at risk for psychosocial burden. The
contributing factors for the caregivers’ burden were 48.6% worried about depressed persons’
general health, 27.4 % reported interpersonal strain, and 25.4 % were concerned about safety.
The authors further discussed that the depressive symptoms in combination with medication side
effects could lead to gradual loss of intimacy and marital discord, which had a negative impact
on recovery.
Robison et al. (2009) study of 4,041 caregivers caring for depressed elderly persons with
chronic disorders found that caregiving burden negatively affected the caregivers’ health (OR
=1.34, p = .03), work (OR = 1.48, p = 0.13), and social status (OR =1.22, p = .29). Caregivers
who were not supported by health care professionals missed work, felt depressed, and socially
isolated, which lead to caregiver burnout and institutionalization of the depressed elderly
persons. Also, Philips et al. (2009) study of 393 caregivers found the strong association of
social isolation (M = 4.2, SD = 4.52, p = .05) and poor sleep (M = 5.2, SD = 3.01, p = .001) to
caregivers’ depression and anxiety score (p = < .05) as an outcome of caregiving burden. It was
discussed in the study that the long-term exposure to caregiver strain and burden could worsen
the symptoms of depression and anxiety of caregivers.
Perlick et al. (2007) cross-sectional study investigated the association of perceived
stigma, depressive symptoms, and avoidance coping among 500 caregivers of depressed bipolar
persons. Perceived stigma was positively associated with less social support (r = 0.24, p = <
.001) and avoidance coping (r = 0.18, p = < .001), which was accountable for 63% of the
relationship between caregiver stigma and depression. The authors explained that perceived
stigma may negatively affect the caregiver mental health by reducing their coping effectiveness.
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Also, Rowe (2012) literature review found poor communication and engagement between
caregivers and health professionals added to the caregiver burden. Caregivers felt an obligation
to care, advocate or share information, and assist in the patient’s recovery, but the constraints on
public policy in confidentiality and informed consent issues were barriers to good relationship.
According to the author, the key for effective care was to acknowledge their obligations, respect
them as partners, and develop a trusting relationship. This would facilitate effective care at home
and improve quality of life for patients and prevent caregiver burnout (Rowe, 2012).
Management and Prevention of Caregiver Burnout
To become sick is one of the greatest risks for most caregivers due to the consequences of
caregiving burden, which makes them less likely to engage in preventive care health measures
and places them at risk of developing serious illness.
Nurse Practitioners can perform a caregiver assessment to identify needs, strengths, and
resources for the family caregiver. Changes in functional status of caregiver and patient,
transitions care, and medical diagnosis such as, dementia, heart failure, stroke, or cancer should
trigger an assessment for caregiver burnout (Family Caregiver Alliance, 2006). The assessment
findings can be used to develop a care plan and to identify appropriate support services. Early
education on signs and symptoms of depression can reduce confusion, feeling of helplessness,
and guilt among family members (Highet, Thompson, & McNair, 2005).
According to the study of Shimazu et al. (2011), the psycho-educational intervention for
specific behavioral issues had the most consistent effects on prevention of depression relapse of
the depressed person. The relapse rate for 9 months follow up was reduced to 8% in the
intervention group who underwent the four psycho-educational sessions consisting of didactic
lectures about depression and problem solving targeting on how to cope with the negative
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behaviors of depressed persons. The relapse was significantly longer in intervention group (M =
9.57, SD = 1.0, p = .002). In addition, Perlick et al. (2010) experimental study found the Family
Focused Treatment – Health Promoting Intervention (FFT – HPI) was effective in reducing the
caregiver’s level of depression (M = 4.6, SD = 2.9, p = 0.037) and avoidance coping (M = 2.0,
SD = 2.3, p = 0.029) over the course of therapy. Therefore, the decrease level in depressed
person’s symptoms is mediated by reduced in caregiver’s level of depression and avoidance
coping.
In a situation wherein marital distress is perceived as the major problem, Barbato and
Avanso (2009) meta-analysis on marital discord and depression found that marital therapy was a
superior intervention for discord relationship (SMD = -1.28 (95% Dl – 1.85 - .72). Marital
therapy improved the interactions among couples and enhanced mutually supportive relationship.
Another example is the literature review of Denton et al. (2003) on couple distress and
depression suggested that couple therapy was an effective intervention to reduce tension, provide
coping skills, and improve caregivers' abilities to cope with the patient’s negative behavior.
Finally, to help ease the feeling of depression and promote caregivers' well-being,
support groups should provide contact and emotional support. The respite and psychosocial
support services provided the best evidence to reduce caregiver burden (Harman et al., 2012).
Primary prevention consists of increasing awareness of depression, knowing signs of burnout,
promotion of healthy life styles, and ways to deal with stress. The education can be done during
patient and family caregiver encounters. Secondary prevention includes the use of community
resources such as respite care services, home maker and home health aide, adult day care, or
nursing skilled care services to provide temporary breaks to caregivers from the demand of daily
care giving tasks. In addition, the referral and use of mental health services such as therapies,
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counseling, and support groups are effective interventions for reduction of stress and prevention
of depression and anxiety.
Significance to Advanced Practice Nursing
Caring for a relative with depression is a distinct and unique experience that not all are
prepared for. It consists of caregiving obligations and consequences (Naiditch et al., 2006).
Health care providers including Nurse Practitioners (NP's) believe in maintaining the optimal
level of functioning through prevention as intervention with the optimal goal of focusing on the
degree of primary and secondary prevention. Primary prevention includes education on the
epidemiology of depression and its treatments, early detection of burnout, and encouragement of
self-care along with healthy coping mechanisms to combat stress and potential health problems.
NP's can also utilize practice guidelines or assessment tools for identifying the early signs
and symptoms of stress, depression, or burnout among caregivers, which could make them feel
valued as a partner at home (Family Caregiver Alliance, 2006). The assessment outcome will be
used for care planning involving family care givers in prevention and treatment approaches.
Collaborating and coordinating care with mental health professionals and counselors are crucial
tools in maintain continuity of care. Other identified unmet care giving needs can be directed to
appropriate health care professionals for assistance through community resources.
NP's can promote self-care strategies such as taking breaks, maintaining healthy lifestyle,
seeking preventive care, joining a support group or counseling, and finding respite care for direct
care giving assistance. NP's can also introduce coping strategies such as praying, talking with
friends and family, and relaxation techniques for stress management (Shimazu et al., 2011).
Other resources include lists of on-line care giving resources, toolkits, or planning guides given
during an office visit (Family Care giving Alliance, 2006).
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Recommendation for Nursing Research
The studies on the caregiving consequences for caring the depressed person without comorbid chronic conditions are limited. Further research needs to be done on this group of
caregivers to better serve the depressed persons at home and to prevent caregiver burnout.
Caregiver assessment can be embedded as part of the guidelines for chronic delivery, in which
collection of data can be performed by NPs or other health care team members. Further research
needs to explore the frequency of assessment and which caregivers should be assessed for
caregiver burnout for those who have multiple family members involved in their care.
Maintaining patient confidentially is crucial in providing care to patients and their families.
Further research needs to be done on the effectiveness of including informed consent during
admission and discharge in order to maintain continuity of care and prevent frustration for
caregivers.
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