Definition
Difficulty in performing family/significant other caregiver role
(NANDA)
**A state in which a person is experiencing physical, emotional,
social, and/or financial burden(s) in the process of giving care to
a significant other.
Defining Characteristics
Expressed or Observed
Insufficient time or physical energy
Difficulty performing required caregiving activities
Conflicts between caregiving responsibilities and other important
roles (e.g., work, relationships)
Apprehension about the future for the care receiver’s health and
ability to provide care
Apprehension about the care receiver’s care when caregiver is ill
or deceased
Feelings of depression or anger
Feelings of exhaustion and resentment
Related Factors
Pathophysiologic
Related to unrelenting or complex care requirements secondary to:
Addiction*
Chronic mental illness
Cognitive problems*
Debilitating conditions (acute,
progressive)
Treatment Related
Related to 24-hour care responsibilities*
Related to time-consuming activities (e.g., dialysis, transportation)
Related to complexity of activities*
Related to increasing care needs*
Situational (Personal, Environmental)
Related to years of caregiving*
Related to unpredictability of care situation or illness course*
Related to inadequate informal support*
Related to unrealistic expectations of caregiver by care receiver, self, or
others*
Related to pattern of impaired individual coping (e.g., abuse, violence,
addiction)*
Related to compromised physical or mental health of caregiver*
Related to history of poor relationship* or family dysfunction*
Related to history of marginal family coping*
Related to duration of caregiving required
Related to isolation
Related to insufficient respite
Related to insufficient finances*
Related to inadequate community resources*
Related to no or unavailable support
Related to insufficient resources
Related to inexperience with caregiving*
Related to deficient knowledge about community resources*
Maturational
Infant, Child, and Adolescent
Related to unrelenting care requirements secondary to:
Developmental delay
Mental disabilities (specify)
Physical disabilities (specify)
Authors Notes
“Health care policies that rely on caregiver sacrifice can be made to
appear cost-effective only if the emotional, social, physical, and financial
costs incurred by the caregiver are ignored” (Winslow & Carter,
1999, p. 285). Worldwide, family caregivers provide the most care for
dependent persons of all ages whether living in developing countries
or developed countries (AARP, 2009). The care receivers have physical
and/or mental disabilities, which can be temporary or permanent.
Some disabilities
are permanent but stable (e.g., blindness); others signal
progressive
deterioration (e.g., Alzheimer’s disease).
Caring and caregiving are intrinsic to all close relationships. They are
“found in the context of established roles such as wife–husband, child–
parent” (Pearlin, Mullan, Semple, & Skaff, 1990, p. 583). Under some
circumstances, caregiving is “transformed from the ordinary exchange of
assistance among people standing in close relationship to one another to
an extraordinary and unequally distributed burden” (Pearlin et al., 1990,
p. 583). It becomes a dominant, overriding component occupying the
entire situation (Pearlin et al.).
Caregiver Role Strain represents the burden of caregiving on the physical
and emotional health of the caregiver and its effects on the family
and social system of the caregiver and care receiver. Risk for Caregiver
Role Strain can be a very significant nursing diagnosis because nurses can
identify those at high risk and assist them to prevent this grave situation.
Chronic sorrow has been associated with caregivers of people with
mental illness and children with chronic illness. See Chronic Sorrow for
more information.
Goals
The caregiver will report a plan to decrease the caregiver’s burden:
• Share frustrations regarding caregiving responsibilities.
• Identify one source of support.
• Identify two changes that would improve daily life if
implemented.
The family will establish a plan for weekly support or help:
• Relate two strategies to increase support.
• Convey empathy to caregiver regarding daily responsibilities.
Interventions
Assess for Causative or Contributing Factors
Refer to Related Factors
Provide Empathy and Promote a Sense of Competency
• Allow caregiver to share feelings.
• Emphasize the difficulties of the caregiving responsibilities.
• Convey admiration of the caregiver’s competency.
• Evaluate effects of caregiving periodically (depression, burnout).
Promote Realistic Appraisal of the Situation
• Determine how long the caregiving has taken place (Winslow &
Carter, 1999).
• Ask the caregiver to describe future life in 3 months, 6 months,
and 1 year.
• Discuss the effects of present schedule and responsibilities on
physical health, emotional status, and relationships.
• Discuss positive outcomes of caregiving responsibilities (for
self, care receiver, family).
• Evaluate if behavior is getting worse.
Promote Insight Into the Situation
• Ask the caregiver to describe “a typical day”:
• Caregiving and household tasks
• Work outside the home
• Role responsibilities
• Ask the caregiver to describe:
• At-home leisure activities (daily, weekly)
• Outside-the-home social activities (weekly)
• Engage other family members in discussion, as appropriate
• Caution the caregiver about the danger of viewing helpers as
less competent or less essential
• Explain that dementia causes memory loss, which results in the
following (Young, 2001):
• Repetitive questions
• Denial of memory loss
• Forgetting
• Fluctuations in memory
Assist Caregiver to Identify Activities for Which He or She Desires
Assistance
• Care receiver’s needs (hygiene, food, treatments, mobility;
refer to Self-Care Deficits)
• Laundry
• House cleaning
• Meals
• Shopping, errands
• Transportation
• Appointments (doctor, hairdresser)
• Yard work
• House repairs
• Respite (hours per week)
• Money management
Stress Importance of Health Promotion
• Rest–exercise balance
• Effective stress management (e.g., yoga, relaxation training,
creative arts)
• Low-fat, high–complex-carbohydrate diet
• Supportive social networks
• Appropriate screening practices for age
• Maintain a good sense of humor; associate with others who laugh
• Advise caregivers to initiate phone contacts or visits with
friends or relatives rather than waiting for others to do it.
Engage Family to Appraise Situation (Apart from Caregiver)
(Shields, 1992).
• Allow the family to share frustrations.
• Share the need for the caregiver to feel appreciated.
• Discuss the importance of regularly acknowledging the burden
of the situation for the caregiver.
• Discuss the benefits of listening without giving advice.
• Differentiate the types of social support (emotional, appraisal,
informational, instrumental).
• Emphasize the importance of emotional and appraisal support,
and identify sources of this support.
• Regular phone calls
• Cards, letters
• Visits
• Stress “that in many situations, there are no problems to be
solved, only pain to be shared” (Shields, 1992).
• Discuss the need to give the caregiver “permission” to enjoy
self (e.g., vacations, day trips).
• Allow caregiver opportunities to respond to “How can I help
you?”
Assist with Accessing Informational and Instrumental Support
• Provide information that is needed with problem-solving
strategies.
• Provide information that is needed for skill-building.
Role Play How to Ask for Help With Activities
• For example: “I have three appointments this week, could you
drive me to one?” “I could watch your children once or twice a
week in exchange for you watching my husband.”
• Identify all possible sources of volunteer help: family (siblings,
cousins), friends, neighbors, church, and community groups.
• Discuss how most people feel good when they provide a “little
help.”
Advise Caregivers About Sources of More Information
• National Center for Women’s Health Information (www.
womenshealth.gov)
• National Health Statistics (www.cdc.gov/ncbddd/disabilityandhealth/
family.html)
• If appropriate, discuss if and when an alternative source of care
(e.g., nursing home) may be indicated.
• Evaluate factors that reduce the stress of deciding on nursing
home placement (Hagen, 2001):
• Low level of guilt
• Independence in the relationship
• Availability of support from others
• Low fear of loneliness
• Positive or neutral nursing home attitudes
• Positive sense of life without care burden
Initiate Health Teaching and Referrals, if Indicated
• Explain the benefits of sharing with other caregivers.
• Support group
• Individual and group counseling
• Telephone buddy system with another caregiver
• Identify community resources available (e.g., counseling, social
service, day care).
• Arrange a home visit by a professional nurse or a physical
therapist to provide strategies to improve communication, time
management, and caregiving.
• Engage others to work actively to increase state, federal, and
private agencies’ financial support for resources to enhance
caregiving in the home.
Determine parents’ understanding of and concerns about
child’s illness, course, prognosis, and related care needs.
• Elicit the effects of caregiving responsibility on:
• Personal life (work, rest, leisure)
• Marriage (time alone, communication, decisions, attention)
• Assist parents to meet the well siblings’ needs for:
• Knowledge of sibling’s illness and relationship to own health
• Sharing feelings of anger, unfairness, embarrassment
• Discussions of future of ill sibling and self (e.g., family
planning,
care responsibilities)
• Discuss strategies to help siblings adapt.
• Include in family decisions when appropriate.
• Keep informed about ill child’s condition.
• Maintain routines (e.g., meals, vacations).
• Prepare for changes in home life.
• Promote activities with peers.
• Avoid making the ill child the center of the family.
• Determine what daily assistance in caregiving is realistic.
• Plan for time alone.
• Advise teachers of home situation.
• Address developmental needs. See Delayed Growth and
Development.
• Advise that caregiving activities produce fatigue that can
increase over time (Williams, 2000).
• Discuss strategies to reduce caregiver fatigue (Williams, 2000).
• Partner support
• Household help
• Child care for siblings
• Provisions to ensure adequacy of caregiver’s sleep.
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