Want to know more

FAMILY CAREGIVING
Nursing Standard of Practice Protocol: Family Caregiving

Deborah C. Messecar, PHD, MPH, RN, CNS

Evidence-Based Content - Updated January 2008

 

The information in this "Want to know more" section is organized according to the following major components of the NURSING PROCESS:

 

Goal

Identify viable strategies to monitor and support family caregivers.

 
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Overview

Family caregivers provide more than 80% of the long-term care for older adults in this country. Caregiving can be difficult, time-consuming work added on top of job and other family responsibilities. If caregivers suffer negative consequences from their caregiving role and these are not mitigated, increased morbidity and mortality may result for caregivers. Not all outcomes from caregiving are negative; there are many caregivers that report rewards from caregiving.

 
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Background and Statement Of Problem

A. Definitions

1. Family caregiving: This is broadly defined and refers to a wide range of unpaid care provided in response to illness or functional impairment to a chronically ill or functionally impaired older family member, partner, friend, or neighbor that exceeds the support usually provided in family relationships. 1

2. Informal caregiving: This is a more inclusive term that refers to help provided by all nonprofessional providers of care, including family members, friends, neighbors, and/or members of a religious or other type of community. In addition to family members or significant others, friends, neighbors, or members of a faith community may provide informal caregiving. 1

3. Family caregiving activities: These include assistance with day-to-day activities, illness-related care, care management, and invisible aspects of care. Day-to-day activities include personal-care activities (e.g., bathing, eating, dressing, mobility, transferring from bed to chair, and using the toilet) and IADLs (e.g., meal preparation, grocery shopping, making telephone calls, and money management). 2,3 Illness-related activities include managing symptoms, coping with illness behaviors, carrying out treatments, and performing medical or nursing procedures that include an array of medical technologies.4 Care-management activities include accessing resources, communicating with and navigating the health care and social services systems, and acting as an advocate.5 Invisible aspects of care are protective actions caregivers take to ensure the older adults' safety and well-being without their knowledge.6

4. Caregiving roles: These can be classified into a hierarchy according to who takes on the majority of responsibilities versus only intermittent supportive assistance. Primary caregivers tend to provide most of the everyday aspects of care, whereas secondary caregivers help out as needed to fill the gaps. 7, 8, 9, 34 Among caregivers who live with their care recipients, spouses account for the majority of primary caregivers, whereas adult children are more likely to be secondary caregivers. The range of the family caregiving role includes protective caregiving such as "keeping an eye on" an older adult who is currently independent but at risk, to full-time, around-the-clock care for a severely impaired family member. Health care providers may fail to assess the full scope of the family caregiving role if they associate family caregiving only with the performance of tasks. 10, 11

5. Caregiver assessment: This refers to an ongoing iterative process of gathering information that describes a family-caregiving situation and identifies the particular issues, needs, resources, and strengths of the family caregiver.

B. Risk factors associated with negative outcomes for caregiving

1. Just being a caregiver puts an individual at increased risk for higher levels of stress and depression and lower levels of subjective well-being and physical health

2. Female caregivers, on average, provide more direct care and report higher levels of burden and depression 12

3. Ethnic minority caregivers provide more care, use less formal services, and report worse physical health than White caregivers. 13, 14, 15

4. African American caregivers experience less stress and depression and get more rewards from caregiving than White caregivers. 12,13, 15, 16

5. Hispanic and Asian American caregivers exhibit more depression. 12, 15

6. Less-educated caregivers report more depression. 12, 17

7. Spouse caregivers report higher levels of depression than non-spouse caregivers.15, 18

8. Caregivers who have a poor-quality relationship with the care recipient report more strain.19, 20, 21, 22, 23

9. Caregivers who lack preparedness for the caregiving role also increases strain. 19, 20

10. Caregivers of care recipients who have dementia suffer from increased strain. 24

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Parameters of Assessment

A. Caregiving Context:

1. Caregiver relationship to care recipient (spouse, non-spouse). 12, 25
2. Caregiver roles and responsibilities a. Duration of caregiving 22 b. Employment status (i.e., work, home, volunteer) 25 c. Household status (e.g., number in home) d. Existence and involvement of extended family and social support 25
3. Physical environment (i.e., home, facility) 11
4. Financial status 11
5. Potential resources that caregiver could choose to use—list 25
6. Family's cultural background 13

B. Caregiver's perception of health and functional status of care recipient:

1. List activities care receiver needs help with; include both ADLs and IADLs 13, 25
2. Presence of cognitive impairment—if yes, any behavioral problems? 12, 25
3. Presence of mobility problems—assess with single question 19

C. Caregiver preparedness for caregiving:

1. Does caregiver have the skills, abilities, knowledge to provide care recipient with needed care? (see Preparedness for Caregiving Scale at www.ConsultGeriRN.org, Family Caregiving topic).

D. Quality of family relationships:

1. The caregiver's perception of the quality of the relationship with the care receiver 19 (see Mutuality Scale; Archbold et. al; Messecar et al., in press).

E. Indicators of problems with quality of care:

1. Unhealthy environment
2. Inappropriate management of finances
3. Lack of respect for older adult (see Elder Assessment Instrument [EAI]) at http://consultgerirn.org/uploads/File/trythis/issue15.pdf).

F. Caregiver’s physical and mental-health status:

1. Self-rated health: single item—asks what is caregivers’ perception of their health 24

2. Health conditions and symptoms

a. Depression or other emotional distress (e.g., anxiety)10,24,25
(See CES-D in Resources section in book).
b. Reports of burden or strain 11,33 See:

3. Rewards of caregiving:

a. List of perceived benefits of caregiving 26
b. Satisfaction of helping family member
c. Developing new skills and competencies
d. Improved family relationships

4. Self-care activities for caregiver

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Nursing-Care Strategies

A. Identify content and skills needed to increase preparedness for caregiving. 12, 25, 27 28, 29

B. Form a partnership with the caregiver prior to generating strategies to address issues and concerns 12, 30, 31

C. Identify the caregiving issues and concerns on which the caregiver wants to work and generate strategies 27, 12, 25 (See Table 8.1 in book for further studies).

D. Assist the caregiver in identifying strengths in the caregiving situation 26

E. Assist the caregiver in finding and using resources. 26, 28, 32

F. Help caregivers identify and manage their physical and emotional responses to caregiving 33

G. Use an interdisciplinary approach when working with family caregivers 12, 27, 25, 28

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Evaluation and Expected Outcomes

A. Outcomes specific to caregiving

1. Lower caregiver strain
2. Decreased depression
3. Improved physical health

B. Outcomes specific to patient

1. Quality of family caregiving
2. Care-recipient functional status, nutrition, hygiene, and symptom management
3. Care-recipient emotional well-being
4. Decreased occurrence of adverse events such as increased frequency of emergent care

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For Definition of Levels of Quantitative Evidence Click Here

Reprinted with permission from Springer Publishing Company.  Messecar, D. C.  (2008).  Family Caregiving.  In E. Capezuti, D. Zwicker, M. Mezey, & T. Fulmer (Eds.)  Evidence-based geriatric nursing protocols for best practice 3rd ed.) (pp. 127-160). New York: Springer Publishing Company, Inc.

 

References


1. Schumacher, K. L., Beck, C. A., & Marren, J. M. (2006). American Journal of Nursing, 106(8), 40–49. Evidence Level VI: Expert Opinion.

2. National Alliance for Caregiving (NAC) and American Association for Retired Persons (AARP) (2004). Caregiving in the U.S. Bethesda and Washington, DC. Evidence Level IV: Nonexperimental Study.

3. Walker, A., Pratt, C. C., & Eddy, L. (1995). Informal caregiving to aging family members: A critical review. Family Relations, 44, 404–411. Evidence Level I: Systematic Review.

4. Smith, C. E. (1994). A model of caregiving effectiveness for technologically dependent adults residing at home. Advances in Nursing Science, 17(2), 27–40. Evidence Level IV: Nonexperimental Study.

5. Schumacher, K. L., Stewart, B. J., Archbold, P. G., Dodd, M. J., & Dibble, S. L. (2000). Family caregiving skill: Development of the concept. Research in Nursing & Health, 23(3), 191–203. Evidence Level IV: Nonexperimental Study.

6. Bowers, B. J. (1987). Intergenerational caregiving: Adult caregivers and their aging parents. Advances in Nursing Science, 9(2), 20–31. Evidence Level IV: Nonexperimental Study.

7. Cantor, M. H., & Little, V. (1985). Aging and social care. In R. H. Binstock & E. Shanas (Eds.), Handbook of aging and the social sciences (2nd ed., pp. 745–781). New York: Van Nostrand Reinhold. Evidence Level V: Narrative Literature Review.

8. Tennstedt, S. L., McKinlay, J. B., & Sullivan, L. M. (1989). Informal care for frail elders: The role of secondary caregivers. Gerontologist, 29(5), 677–683. Evidence Level IV: Nonexperimental Study.

9. Sullivan, M. T. (Feb 2002). Caregiver strain index (CSI). Try this: Best practices in nursing care to older adults: Issue #14. Retrieved February, 8, 2007, from The John A. Hartford Institute for Geriatric Nursing, College of Nursing, New York University Web site: http://consultgerirn.org/uploads/File/trythis/issue14.pdf

10. Pinquart, M., & Sorensen, S. (2003). Differences between caregivers and noncaregivers in psychological health and physical health: A meta-analysis. Psychology & Aging, 18(2), 250–267. Evidence Level I: Systematic Review.

11. Vitaliano, P. P., Zhang, J., & Scanlan, J. M. (2003). Is caregiving "hazardous to one's physical health"? A meta-analysis. Psychological Bulletin, 129, 946–997. Evidence Level I: Systematic Review.

12. Gitlin, L. N., Belle, S. H., Burgio, L. D., Czaja, S. J., Mahoney, D., Gallagher-Thompson, D., et al. (2003). Effect of multicomponent interventions on caregiver burden and depression: The REACH multisite initiative at 6-month follow-up. Psychology & Aging, 18(3), 361–374. Evidence Level I: Systematic Review.

13. Dilworth-Anderson, P., Williams, I. C., & Gibson, B. E. (2002). Issues of race, ethnicity, and culture in caregiving research: A 20-year review (1980–2000). Gerontologist, 42(2), 237–272. Evidence Level I: Systematic Review.

14. McCann, J. J., Hebert, L. E., Beckett, L. A., Morris, M. C., Scherr, P. A., & Evans, D. A. (2000). Comparison of informal caregiving by Black and White older adults in a community population. Journal of the American Geriatrics Society, 48, 1612–1617. Evidence Level IV: Nonexperimental Study.

15. Pinquart, M., & Sorenson, S. (2005). Ethnic differences in stressors, resources, and psychological outcomes of family caregiving: A meta-analysis. Gerontologist, 45, 90–106. Evidence Level I: Systematic Review.

16. Cuellar, N. G. (2002). Comparison of African American and Caucasian American female caregivers of rural, post-stroke, bedbound older adults. Journal of Gerontological Nursing 28, 36–45. Evidence Level IV: Nonexperimental Study.

17. Buckwalter, K. C., Gerdner, L., Kohout, F., Hall, G. R., Kelly, A., Richards, B., et al. (1999). A nursing intervention to decrease depression in family caregivers of persons with dementia. Archives of Psychiatric Nursing, 13(2), 80–88. Evidence Level II: Individual Experimental Study.

18. Pruchno, R. A., & Resch, N. L. (1989). Mental health of caregiving spouses: Coping as mediator, moderator, or main effect? Psychology & Aging, 4, 454–463. Evidence Level I: Systematic Review.

19.Archbold, P. G., Stewart, B. J., Greenlick, M. R., & Harvath, T. A. (1990). Mutuality and preparedness as predictors of caregiver role strain. Research in Nursing & Health, 13(6), 375–384. Evidence Level II: Individual Experimental Study.

20. Archbold, P. G., Stewart, B. J., Greenlick, M. R., & Harvath, T. A. (1992). Clinical assessment of mutuality and preparedness in family caregivers to frail older people. In S. G. Funk, E. M. Tornquist, M. T. Champagne, & L. A. Copp (Eds.), Key aspects of elder care (pp. 332–337). New York: Springer Publishing Company, Inc. Evidence Level II: Individual Experimental Study.

21. Archbold, Stewart, Greenlick, & Harvath,., 1990, 1992 [Level II]; Croog, Burleson, Sudilovsky, & Baume, 2006 [Level IV]. Caregivers who have a poor-quality relationship with the care recipient report more strain.19, 20, 21, 22, 23

22. Croog, S. H., Burleson, J. A., Sudilovsky, A., & Baume, R. M. (2006). Spouse caregivers of Alzheimer’s patients: Problem responses to caregiver burden. Aging & Mental Health, 10(2), 87–100. Evidence Level IV: Nonexperimental Study.

23. Flannery, R. B. J. (2002). Disrupted caring attachments: Implications for long-term care. American Journal of Alzheimer’s Disease and Other Dementias, 17(4), 227–231. Evidence Level VI: Expert Opinion.

24. Pinquart, M., & Sorensen, S. (2006). Gender differences in caregiver stressors, social resources, and health: An updated meta-analysis. Journals of Gerontology, Series B: Psychological Sciences and Social Sciences, 61B(1), P33–P45. Evidence Level I: Systematic Review.

25. Sorensen, S., Pinquart, M., & Duberstein, P. (2002). How effective are interventions with caregivers? An updated meta-analysis. Gerontologist, 42(3), 356–372. Evidence Level I: Systematic Review.

26. Archbold, P. G., Stewart, B. J., Miller, L. L., Harvath, T. A., Greenlick, M. R., Van Buren, L., et al. (1995). The PREP system of nursing interventions: A pilot test with families caring for older members—preparedness (PR), enrichment (E), and predictability (P). Research in Nursing & Health, 18(1), 3–16. Evidence Level II: Individual Experimental Study.

27. Acton, G. J., & Winter, M. A. (2002). Interventions for family members caring for an elder with dementia. Annual Review of Nursing Research, 20, 149–179. Evidence Level I: Systematic Review.

28. Farran, C. J., Gilley, D. W., McCann, J. J., Bienias, J. L., Lindeman, D. A., Evans, D. A. (2004). Psychosocial interventions to reduce depressive symptoms of dementia caregivers: A randomized clinical trial comparing two approaches. Journal of Mental Health and Aging, 10(4), 337–350. Evidence Level II: Individual Experimental Study.

29. Farran, C. J., Loukissa, D., Perraud, S., & Paun, O. (2003). Alzheimer’s disease caregiving information and skills, Part I: Care recipient issues and concerns. Research in Nursing & Health, 26(5), 366–375. Evidence Level IV: Nonexperimental Study.

30. Brodaty, H., Green, A., & Koschera, A. (2003). Meta-analysis of psychosocial interventions for caregivers of people with dementia. Journal of the American Geriatrics Society, 51(5), 657–664. Evidence Level I: Systematic Review.

31. Harvath, T. A., Archbold, P. G., Stewart, B. J., Gadow, S., Kirschling, J. M., Miller, L., et al. (1994). Establishing partnerships with family caregivers: Local and cosmopolitan knowledge. Journal of Gerontological Nursing, 20(2), 29–35, 42–43. Evidence Level V: Narrative Literature Review.

32. Schumacher, K. L., Koresawa, S., West, C., Hawkins, C., Johnson, C., & Wais, E., et al. (2002). Putting cancer pain management regimens into practice at home. Journal of Pain and Symptom Management, 23(5), 369–382. Evidence Level IV: Nonexperimental Study.

33. Schulz, R., & Beach, S. R. (1999). Caregiving as a risk factor for mortality: The caregiver health effects study. Journal of the American Medical Association, 282(23), 2215–2219. Evidence Level II: Individual Experimental Study.

34. Penning, M. J. (1990). Receipt of assistance by elderly people: Hierarchical selection and task specificity. Gerontologist, 30, 220–227. Evidence Level IV: Nonexperimental Study.

 

Last updated - January 2008

 
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