Nursing Standard of Practice Protocol: Family Caregiving
Deborah C. Messecar, PHD, MPH, RN, GCNS-BC
Evidence-Based Content - Updated August 2012
Reprinted with permission from Springer Publishing Company. Evidence-Based Geriatric Nursing Protocols for Best Practice, 4th Edition, © Springer Publishing Company, LLC. These protocols were revised and tested in NICHE hospitals. The text is available here.
The information in this "Want to know more" section is organized according to the following major components of the NURSING PROCESS:
Identify viable strategies to monitor and support family caregivers.
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.
Background and Statement Of Problem
1. Family caregiving 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. Caregiver role transitions: Caregiver role acquisition is a family role transition that occurs through situated interaction as part of a role-making process. This is the process of taking on the caregiving role at the beginning of caregiving or when a significant change in the caregiving context occurs. Role transitions occur when a role is added to or deleted from the role set of a person, or when the behavioral expectations for an established role change significantly (Ref 2).
3. Indicators of healthy caregiver role transitions: The broad categories of indicators of healthy transitions include subjective well-being, role mastery, and well being of relationships. These are the subjective, behavioral, and interpersonal parameters of health most likely to be associated with healthy role transitions (Ref 2).
4. Family caregiving activities 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 (bathing, eating, dressing, mobility, transferring from bed to chair, and using the toilet) and IADL (meal preparation, grocery shopping, making telephone calls, and money management).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
5. Caregiving roles can be classified into a hierarchy according to who takes on the bulk 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 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.
6. Caregiver assessment 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. Etiology and/or epidemiology of risk factors associated with unhealthy caregiving transitions
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 (Ref 10; 11)
2. Female caregivers on average provide more direct care and report higher levels of burden and depression12
3. Ethnic minority caregivers provide more care, use less formal services, and report worse physical health than White caregivers. (Ref 10; 13)13
4. African American caregivers experience less stress and depression and get more rewards from caregiving than White caregivers. (Ref 12; 13; 14; 15)12,13
5. Hispanic and Asian American caregivers exhibit more depression.12,15
6. Less-educated caregivers report more depression. (Ref 12; 16)12
7. Spouse caregivers report higher levels of depression than non-spouse caregivers. (Ref 15; 17)15
8. Caregivers who have a poor quality relationship with the care recipient report more strain. (Ref 18; 19; 20)19,20
9. Caregivers who lack preparedness for the caregiving role also increases strain. (Ref 19; 21)19
10. Caregivers of care recipients who have dementia. (Ref 22)
Parameters of Assessment
A. Caregiving context
1. Caregiver relationship to care recipient (spouse, non-spouse). (Ref 12; 23)12
2. Caregiver roles and responsibilities
a. Duration of caregiving (Ref 23)
b. Employment status (work/home/volunteer) (Ref 15)
c. Household status (number in home, etc.) (Ref 15)
d. Existence and involvement of extended family and social support (Ref 15)
3. Physical environment (home, facility)11
4. Financial status11
5. Potential resources that caregiver could choose to use—list (Ref 15)
6. Family's cultural background13
B. Caregiver's perception of health and functional status of care recipient
1. List activities care receiver needs help with; include both ADL and IADL (Ref 15)
2. Presence of cognitive impairment—if yes, any behavioral problems? (Ref 12, 23)12
3. Presence of mobility problems—assess with single question19
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, Family Caregiving topic).
D. Quality of family relationships
1. The caregiver's perception of the quality of the relationship with the care receiver19 (see Mutuality Scale). (Ref 19; 24)
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/resources [link]).
F. Caregiver’s physical and mental-health status
1. Self-rated health: single item—asks what is caregivers’ perception of their health (Ref 10)
2. Health conditions and symptoms
a. Depression or other emotional distress (e.g., anxiety) (Ref 10; 22; 23) 10
(See http://www.chcr.brown.edu/pcoc/cesscale.pdf [link]).
b. Reports of burden or strain (Ref 11; 25) 11 See:
Try This Issue 14 - The Modified Caregiver Strain Index (CSI)
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
A. Identify content and skills needed to increase preparedness for caregiving. (Ref 12; 23; 27; 28; 29)12,27,28,29
B. Form a partnership with the caregiver prior to generating strategies to address issues and concerns12,30,31
C. Invite participation in care while in the hospital using the Family Preferences Index, a 14-item approach to exploring caregivers’ personal choices for participating in the care of hospitalized older adult family members to determine preferences to provide care (Ref 32)
D. Identify the caregiving issues and concerns on which the caregiver wants to work and generate strategies (Ref 12; 23; 27)27,12
E. Assist the caregiver in identifying strengths in the caregiving situation26
F. Assist the caregiver in finding and using resources. (Ref 26; 33; 34)26
G. Use an interdisciplinary approach when working with family caregivers (Ref 12; 23; 28; 33)12,28
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
For Definition of Levels of Quantitative Evidence Click Here
From Evidence-Based Geriatric Nursing Protocols for Best Practice, 4th Edition. © Springer Publishing Company, LLC.
1. Schumacher, K. L., Beck, C. A., & Marren, J. M. (2006). American Journal of Nursing, 106(8), 40–49. Evidence Level VI.
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.
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.
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.
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.
6. Bowers, B. J. (1987). Intergenerational caregiving: Adult caregivers and their aging parents. Advances in Nursing Science, 9(2), 20–31. Evidence Level IV.
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.
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.
9. Penning, M. J. (1990). Receipt of assistance by elderly people: Hierarchical selection and task specificity. Gerontologist, 30, 220–227. Evidence Level IV: Nonexperimental Study.
10. 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.
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.
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.
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.
14. 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.
15. Pinquart, M., & Sorensen, S. (2004). Associations of caregiver stressors and uplifts with subjective well-being and depressive mood: A meta-analytic comparison. Aging & Mental Health, 18(5), 438-449. Evidence Level I.
16. 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.
17. 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.
18. 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.
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. 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.
21. 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.
22. 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.
23. 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.
24. Messecar, D.C., Parker-Walsch, C., & Lindauer, A. (in press). Family caregiving. In V. Hirth (Ed.), A case-based approach. Burr Ridge, IL: McGraw-Hill.
25. 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.
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., 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.
29. Pusey, H., & Richards, D. (2001). A systematic review of the effectiveness of psychosocial interventions for carers of people with dementia. Aging & Mental Health, 5(2), 107-119. Evidence Level I.
30. 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.
31. 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.
32. Messecar, D., Powers, B.A., & Nagel, C.L. (2008). The Family Preferences Index: Helping family members who want to participate in the care of a hospitalized older adult. The American Journal of Nursing, 108(9), 52-59.
33. 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.
34. 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.
Last updated - August 2012