CAREGIVER ROLE STRAIN

Risk for Caregiver Role Strain

Difficulty in fulfilling care responsibilities, expectations, and/or behaviors for family or significant others

Caregiving Activities

Apprehensive about future ability to provide care

Apprehensive about future health of care receiver

Apprehensive about potential institutionalization of care receiver

Apprehensive about well-being of care receiver if unable to provide care

Difficulty completing required tasks

Difficulty performing required tasks

Dysfunctional change in caregiving activities

Preoccupation with care routine

Caregiver Health Status: Physiological

Fatigue

Gastrointestinal distress

Headache

Hypertension

Rash

Reports altered sleep-wake cycle

Weight change

Caregiver Health Status: Emotional

Depressive symptoms

Emotional lability

Expresses anger

Expresses frustration

Impatience

Insufficient time to meet personal needs

Nervousness

Somatization

Caregiver Health Status: Socioeconomic

Altered leisure activities

Isolation

Low work productivity

Refuses career advancement

Caregiver-Care Receiver Relationship

Difficulty watching care receiver with illness

Sadness about altered interpersonal relations with care receiver

Uncertainty about alteration in interpersonal relations with care receiver

Family Processes

Family conflict

Reports concern about family member(s)

Caregiver Factors

Competing role commitments

Depressive symptoms

Inadequate fulfillment of others' expectations

Inadequate fulfillment of self-expectations

Inadequate knowledge about community resources

Inadequate psychological resilience

Inadequate recreation

Ineffective coping strategies

Inexperience with caregiving

Insufficient physical endurance

Insufficient privacy

Not developmentally ready for caregiver role

Physical conditions

Social Isolation

Stressors

Substance misuse

Unrealistic self-expectations

Care Receiver Factors

Discharged home with significant needs

Increased care needs

Loss of independence

Problematic behavior

Substance misuse

Unpredictability of illness trajectory

Unstable health status

Caregiver-Care Receiver Relationship

Abusive interpersonal relations

Codependency

Inadequate interpersonal relations

Unaddressed abuse

Unrealistic care receiver expectations

Violent interpersonal relations

Caregiving Activities

Altered nature of care activities

Around-the-clock care responsibilities

Complexity of care activities

Excessive caregiving activities

Extended duration of caregiving required

Inadequate assistance

Inadequate equipment for providing care

Inadequate physical environment for providing care

Inadequate respite for caregiver

Insufficient time

Unpredictability of care situation

Family Processes

Family isolation

Ineffective family adaptation

Pattern of family dysfunction

Pattern of family dysfunction prior to the caregiving situation

Pattern of ineffective family coping

Socioeconomic

Difficulty accessing assistance

Difficulty accessing community resources

Difficulty accessing support

Inadequate community resources

Inadequate social support

Inadequate transportation

Social alienation

Care receiver with developmental disabilities

Caregiver delivering care to partner

Caregiver with developmental disabilities

Female caregiver

Individuals delivering care to infants born prematurely

Individuals experiencing financial crisis

Caregiver Factors

Impaired health status

Psychological disorder

Care Receiver Factors

Chronic disease

Cognitive dysfunction

Congenital disorders

Illness severity

Mental disorders

AUTHOR'S NOTE

Caregiver Role Strain and Risk for Caregiver Role Strain are 2 nursing diagnoses that when addressed by nurses will provide support and education to individuals and their caregivers, which can profoundly influence factors that bond families, not destroy them. "Healthcare 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 most care for dependent persons of all ages whether living in developing countries or developed countries (AARP, 2018). It becomes a dominant, overriding component occupying the entire situation (*Pearlin et al., 1990). 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.

Level 1 Fundamental Focused Assessment (all settings)

On a scale from 0 to 10 (0 = not tired, peppy to 10 = total exhaustion), rate the fatigue you usually feel.

How well do you manage your caregiving responsibilities?

Who helps you?

What are you most concerned about?

Level 2 Extended Focused Assessment

On a scale from 0 to 10 (0 = not tired, peppy to 10 = total exhaustion), rate the fatigue you usually feel.

How well do you manage your caregiving responsibilities?

Who helps you?

What are you most concerned about?

Household responsibilities?

Life outside caregiving?

Work outside the home responsibilities? Family responsibilities?

Family members in household: parents, spouse, children?

Grandparents, extended family, in-laws?

Economic concerns?

Care receiver characteristics cognitive status (e.g., memory, speech)?

History of relationship with caregiver?

Problematic behaviors (*Pearlin et al., 1990)?

Threatens, suspicious, dementia, cries easily, repeats questions and requests?

Depressed, insomnia, history of substance abuse?

Who is in your support system? (family, friends, clergy, agency, group)

What kind of support? How often?

What have you given up because of your caregiver responsibilities?

The caregiver will report a plan to decrease caregiver's burden:

• Share frustrations regarding caregiving responsibilities.
• Relate 2 strategies to increase support.
• Identify 2 changes that would improve daily life if implemented.

Level 1 Fundamental Interventions (all settings)

Acknowledge the difficulties of caregiving responsibilities.

Does anyone help you with caregiving, chores, meals?

What kind of help would you want?

If Caregiver Role Strain is suspected, refer to social services or for a home health nursing assessment.

Level 2 Extended Interventions (community, primary care, rehabilitation)

Assess for Causative or Contributing Factors

Refer to Related Factors.

For a new caregiver (Smith & Segal, 2015):

• Learn as much as you can about your family member's illness and about how to be a caregiver.
• Encourage your loved one to do as much as he or she can. This will promote his or her self-esteem and some independence.
• Know your limits. Be realistic about how much of your time and yourself you can give. Set clear limits, and communicate those limits to other family members and people involved.

Explore with the Caregivers the History and Quality of Their Relationship with Their Family Members and How They Feel About Being a Caregiver (Smith & Segal, 2015)

• Anxiety about their ability; fears related to the future.
• Anger toward the person and other family members about not receiving help with daily responsibilities.
• Guilt for not doing more, not being a "better" caregiver or having more patience, or in the case of long-distance caregiving, not being available more often.
• Grief for the "many losses that can come with caregiving (the healthy future you envisioned with your spouse or child; the goals and dreams you've had to set aside)."
  • In addition, if your loved one is terminally ill, grieving is present.

Provide Empathy and Promote a Sense of Competency

• Allow caregiver to share feelings.
• Emphasize the difficulties of the caregiving responsibilities.
• If indicated, encourage the caregiver opportunities to share the positive aspects of their caregiving.

R:Lindgren (*1990) reported that burnout in caregivers was related to emotional exhaustion and a low sense of accomplishment. Sharing their personal positive aspects as personal gratification, social approval, and giving back to a parent can add clarity and meaning, which may mediate the burdens of caregiving (Shim, Barroso, Giles, & Davis, 2013).

Promote Insight into the Situation

Review the information received during the assessment.

Engage other family members in discussion, as appropriate.

R:Caregiver stress is not an event but "a mix of circumstances, experiences, responses, and resources that vary considerably among caregivers and that consequently vary in their impact on caregivers' health and behavior" (*Pearlin et al., 1990). The burden of caregiving can be reduced by good communication with providers, the assistance and support of an interdisciplinary team, and educational programs (Twaddle & McCormack, 2021).

Assist Caregiver to Identify the Activities for Which He or She Desires Assistance

Caution the Caregiver About the Danger of Viewing Helpers as Less Competent or Less Essential

Advise the caregiver to list caregiving needs (Smith & Segal, 2015):

• Laundry
• Housecleaning
• Meals
• Shopping, errands
• Transportation
• Appointments (primary care providers, specialists, tests, hairdresser)
• Yard work
• House repairs
• Respite (hours per week)
• Money management

Role-Play How to Ask for Help with Activities

• For example: "I have 3 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."

Engage Family to Appraise Situation (Apart From Caregiver) (*Shields, 1992)

R:Shields (*1992) reported a primary source of conflict among family members and the caregiver as unsatisfied needs. The caregiver wishes for others to affirm the burden, when, in fact, the family responds to the caregiver's complaints with problem-solving techniques. The caregiver appears to reject suggestions, which annoys the family. The results are a "caregiver feeling unappreciated, unsupported, and depressed, and family members feeling angry and rejected toward the caregiver."

• Allow the family to share frustrations.
• Discuss the importance of regularly acknowledging the burden of the situation for the caregiver.
• Differentiate the types of support (emotional, appraisal, informational, instrumental).
• 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).

Ask each individual to identify areas he or she can help with. (Take responsibility for something themselves or pay for services, e.g., respite)

Advise them to ask the caregiver, "How can I help you?"

R:Numerous researchers have identified consistent social supports as the single most significant factor that reduces or prevents caregiver role strain (*Clipp & George, 1990; *Pearlin et al., 1990; *Shields, 1992; Bevans & Sternberg, 2012).

Stress the Importance of Taking Care of Self

• 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.

R:Caregivers must maintain their own health to be successful with coping with caregiving responsibilities.

Initiate Health Teaching and Referrals, if Indicated

Refer caregivers and significant others to Caregiver Stress and Burnout: Tips for Regaining Your Energy, Optimism, and Hope by Mellissa Smith accessed at

helpguide.org/articles/stress/caregiver-stress-and-burnout.htm.

Explain the benefits of sharing with other caregivers.

• Support group
• Individual and group counseling
• Telephone buddy system with another caregiver

R:It has been reported that individual and group counseling increased the number of support persons and decreased caregiver stress (*Roth et al., 2005; Halter, 2018).

• 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.

R:These strategies emphasize the need for the caregiver to protect their health with a balance of work, sleep, leisure, and support and to identify sources of help in the community.