Clinical Review

Supporting the Needs of Stroke Caregivers Across the Care Continuum

Journal of Clinical Outcomes Management. 2016 December;23(12)

References

1. Mozaffarian D, Benjamin EJ, Go AS, et al. on behalf of the American Heart Association Statistics Committee & Stroke Statistics Subcommittee. Heart disease and stroke statistics - 2016 update: A report from the American Heart Association. Circulation 2016;132:e38–e360.

2. Feigin VL, Krishnamurthi RV, Parmar P, et al. Update on the global burden of ischemic and hemorrhagic stroke in 1990-2013: The GBD 2013 Study. Neuroepidemiology 2015;45:161–76.

3. Hall MJ, Levant S, DeFrances CJ. Hospitalization for stroke in U.S. hospitals, 1989-2009. Hyattsville, MD: National Center for Heatlh Statistics; 2012.

4. Prvu Bettger J, McCoy L, Smith EE, et al. Contemporary trends and predictors of postacute service use and routine discharge home after stroke. J Am Heart Assoc 2015;4(2).

5. Winstein CJ, Stein J, Arena R, et al. Guidelines for adult stroke rehabilitation and recovery: a guideline for healthcare professionals from the American Heart Association/American Stroke Association. Stroke 2016;47:e98–e169.

6. Talley RC, Crews JE. Framing the public health of caregiving. Am J Public Health 2007;97:224–8.

7. van Exel NJ, Koopmanschap MA, van den Berg B, et al. Burden of informal caregiving for stroke patients: odentification of caregivers at risk of adverse health effects. Cerebrovasc Dis 2005;19:11–7.

8. van Exel NJ, Scholte op Reimer WJ, Brouwer WB, et al. Instruments for assessing the burden of informal caregiving for stroke patients in clinical practice: a comparison of CSI, CRA, SCQ and self-rated burden. Clin Rehabil 2004;18:203–14.

9. Lutz BJ, Young ME, Cox KJ, et al. The crisis of stroke: experiences of patients and their family caregivers. Top Stroke Rehabil 2011;18:786–97.

10. McCullagh E, Brigstocke G, Donaldson N, Kalra L. Determinants of caregiving burden and quality of life in caregivers of stroke patients. Stroke 2005;36:2181–6.

11. van Exel NJ, Brouwer WB, van den Berg B, et al. What really matters: an inquiry into the relative importance of dimensions of informal caregiver burden. Clin Rehabil 2004;18:683–93.

12. Perrin PB, Heesacker M, Hinojosa MS et al. Identifying at-risk, ethnically diverse stroke caregivers for counseling: a longitudinal study of mental health. Rehabil Psychol 2009;54:138–49.

13. Greenwood N, Mackenzie A, Cloud GC, Wilson N. Informal carers of stroke survivors--factors influencing carers: a systematic review of quantitative studies. Disabil Rehabil 2008;30:1329–49.

14. Camak DJ. Addressing the burden of stroke caregivers: a literature review. J Clin Nurs 2015;24:2376–82.

15. White CL, Barrientos R, Dunn K. Dimensions of uncertainty after stroke: perspectives of the stroke survivor and family caregiver. J Neurosci Nurs 2014;46:233–40.

16. Saban KL, Sherwood PR, DeVon HA, Hynes DM. Measures of psychological stress and physical health in family caregivers of stroke survivors: a literature review. J Neurosci Nurs 2010;42:128–38.

17. Kruithof WJ, Post, MWM, van Mierlo M, et al. Caregiver burden and emotional problems in partners of stroke patients at two months and one year post-stroke: determinants and prediction. Patient Educ Couns 2016. Forthcoming.

18. Sarre S, Redlich C, Tinker A, et al. A systematic review of qualitative studies on adjusting after stroke: lessons for the study of resilience. Disabil Rehabil 2014;36:716–26.

19. Cameron JI, Naglie G, Dick T, et al. Are we meeting the changing needs of family caregivers to stroke survivors across the care continuum? A systematic review of the caregiver intervention literature. Stroke 2012;43:E143-E.

20. Miller EL, Murray L, Richards L, et al. Comprehensive overview of nursing and interdisciplinary rehabilitation care of the stroke ptient: a scientific statement from the American Heart Association. Stroke 2010;41:2402–48.

21. Perrin PB, Heesacker M, Stidham BS, et al. Structural equation modeling of the relationship between caregiver psychosocial variables and functioning of individuals with stroke. Rehabil Psychol 2008;53:54–62.

22. Roth DL, Perkins M, Wadley VG, et al. Family caregiving and emotional strain: associations with quality of life in a large national sample of middle-aged and older adults. Qual Life Res 2009;18:679–88.

23. Haley WE, Roth DL, Hovater M, Clay OJ. Long-term impact of stroke on family caregiver well-being: a population-based case-control study. Neurology 2015;84:1323–9.

24. Greenwood N, Mackenzie A. Informal caring for stroke survivors: meta-ethnographic review of qualitative literature. Maturitas 2010;66:268–76.

25. Ostwald SK, Bernal MP, Cron SG, Godwin KM. Stress experienced by stroke survivors and spousal caregivers during the first year after discharge from inpatient rehabilitation. Top Stroke Rehabil 2009;16:93–104.

26. Brereton L, Carroll C, Barnston S. Interventions for adult family carers of people who have had a stroke: a systematic review. Clin Rehabil 2007;21:867–84.

27. Greenwood N, Mackenzie A, Cloud G, Wilson N. Loss of autonomy, control and independence when caring: a qualitative study of informal carers of stroke survivors in the first three months after discharge. Disabil Rehabil 2009:1–9.

28. Visser-Meily A, Post M, van de Port I, et al. Psychosocial functioning of spouses of patients with stroke from initial inpatient rehabilitation to 3 years poststroke: course and relations with coping strategies. Stroke 2009;40:1399–404.

29. Visser-Meily A, Post M, van de Port I, et al. Psychosocial functioning of spouses in the chronic phase after stroke: improvement or deterioration between 1 and 3 years after stroke? Patient Educ Couns 2008;73:153–8.

30. Haley WE, Allen JY, Grant JS, et al. Problems and benefits reported by stroke family caregivers: results from a prospective epidemiological study. Stroke 2009;40:2129–33.

31. Berg A, Palomaki H, Lonnqvist J, et al. Depression among caregivers of stroke survivors. Stroke 2005;36:639–43.

32. van Heugten C, Visser-Meily A, Post M, Lindeman E. Care for carers of stroke patients: evidence-based clinical practice guidelines. J Rehabil Med 2006;38:153–8.

33. Bakas T, Kroenke K, Plue LD, et al. Outcomes among family caregivers of aphasic versus nonaphasic stroke survivors. Rehabil Nurs 2006;31:33–42.

34. Gaugler JE. The longitudinal ramifications of stroke caregiving: a systematic review. Rehabil Psychol 2010;55:108–25.

35. Andrew NE, Kilkenny MF, Naylor R, et al. The relationship between caregiver impacts and the unmet needs of survivors of stroke. Patient Prefer Adher 2015;9:1065–73.

36. Chung ML, Bakas T, Plue LD, Williams LS. Effects of self-esteem, optimism, and perceived control on depressive symptoms in stroke survivor-spouse dyads. J Cardiovasc Nurs 2016;31:E8–E16.

37. Grant JS, Clay OJ, Keltner NL, et al. Does caregiver well-being predict stroke survivor depressive symptoms? a mediation analysis. Top Stroke Rehabil 2013;20:44–51.

38. Murray J, Young J, Forster A, Ashworth R. Developing a primary care-based stroke model: the prevalence of longer-term problems experienced by patients and carers. Br J Gen Pract 2003;53:803–7.

39. Pierce LL, Steiner V, Govoni A, et al. Two sides to the caregiving story. Top Stroke Rehabil 2007;14:13–20.

40. Mackenzie A, Greenwood N. Positive experiences of caregiving in stroke: a systematic review. Disabil Rehabil 2012;34:1413–22.

41. Parag V, Hackett ML, Yapa CM, et al. The impact of stroke on unpaid caregivers: results from The Auckland Regional Community Stroke study, 2002-2003. Cerebrovasc Dis (Basel, Switzerland) 2008;25:548–54.

42. Kruithof WJ, Post MWM, Visser-Meily JMA. Measuring negative and positive caregiving experiences: a psychometric analysis of the Caregiver Strain Index Expanded. Clin Rehabil 2015;29:1224–33.

43. Lutz BJ. Determinants of discharge destination for stroke patients. Rehabil Nurs 2004;29:154–63.

44. Lutz BJ, Young ME, Creasy KR, et al. Improving stroke caregiver readiness for transition from inpatinet rehabilitation to home. Gerontologist 2016. Forthcoming.

45. Visser-Meily JM, Post MW, Riphagen II, Lindeman E. Measures used to assess burden among caregivers of stroke patients: a review. Clin Rehabil 2004;18:601–23.

46. Moon M. The unprepared caregiver. Gerontologist 2016 Apr 21.

47. Pierce LL, Steiner V, Govoni AL, et al. Internet-based support for rural caregivers of persons with stroke shows promise. Rehabil Nurs 2004;29:95–9,103.

48. Bakas T, Austin JK, Okonkwo KF, et al. Needs, concerns, strategies, and advice of stroke caregivers the first 6 months after discharge. J Neurosci Nurs 2002;34:242–51.

49. Lutz BJ, Chumbler NR, Lyles T, et al. Testing a home-telehealth programme for US veterans recovering from stroke and their family caregivers. Disabil Rehabil 2009;31:402–9.

50. Hayes J, Chapman P, Young LJ, Rittman M. The prevalence of injury for stroke caregivers and associated risk factors. Top Stroke Rehabil 2009;16:300–7.

51. Cameron JI, Gignac MA. “Timing It Right”: a conceptual framework for addressing the support needs of family caregivers to stroke survivors from the hospital to the home. Patient Educ Couns 2008;70:305–14.

52. Creasy KR, Lutz BJ, Young ME, et al. The impact of interactions with providers on stroke caregivers’ needs. Rehabil Nurs 2013;38:88–98.

53. Bakas T, Farran CJ, Austin JK, et al. Stroke caregiver outcomes from the Telephone Assessment and Skill-Building Kit (TASK). Top Stroke Rehabil 2009;16:105–21.

54. Cameron JI, Naglie G, Silver FL, Gignac MA. Stroke family caregivers’ support needs change across the care continuum: a qualitative study using the timing it right framework. Disabil Rehabil 2013;35:315–24.

55. Cameron JI, O’Connell C, Foley N, et al. Canadian Stroke Best Practice Recommendations: Managing transitions of care following Stroke. Guidelines Update 2016. Int J Stroke. 2016.

56. Family Caregiver Alliance. Caregivers Count Too! A toolkit to help practitioners assess the needs of family caregivers. San Francisco: 2006. Accessed 16 Aug 2016 at www.caregiver.org/caregivers-count-too-toolkit.

57. Messecar DC. Nursing standard of practice protocol: family caregiving [Internet]. Accessed at www.consultgeri.org/geriatric-topics/family-caregiving.

58. Young ME, Lutz BJ, Creasy KR et al. A comprehensive assessment of family caregivers of stroke survivors during inpatient rehabilitation. Disabil Rehabil 2014;36:1892–902.

59. Archbold PG, Stewart BJ, Greenlick MR, Harvath T. Mutuality and preparedness as predictors of caregiver role strain. Res Nurs Health 1990;13:375–84.

60. Pucciarelli G, Savini S, Byun E, et al. Psychometric properties of the Caregiver Preparedness Scale in caregivers of stroke survivors. Heart & Lung 2014;43:555–60.

61. Deeken JF, Taylor KL, Mangan P et al. Care for the caregivers: a review of self-report instruments developed to measure the burden, needs, and quality of life of informal caregivers. J Pain Symptom Manage 2003;26:922–53.

62. Haley WE, Roth DL, Howard G, Safford MM. Caregiving strain and estimated risk for stroke and coronary heart disease among spouse caregivers: differential effects by race and sex. Stroke 2010;41:331–6.

63. Bakas T, Champion V, Perkins SM, et al. Psychometric testing of the revised 15-item Bakas Caregiving Outcomes Scale. Nurs Res 2006;55:346–55.

64. Family Caregiver Alliance. Selected caregiver assessment measures: A resource inventory for practitioners. 2d ed. Accessed at www.caregiver.org/selected-caregiver-assessment-measures-resource-inventory-practitioners-2012.

65. Bakas T, Clark PC, Kelly-Hayes M, et al. Evidence for stroke family caregiver and dyad interventions: a statement for healthcare professionals from the American Heart Association/American Stroke Association. Stroke 2014;45:2836–52.

66. Cheng HY, Chair SY, Chau JPC. The effectiveness of psychosocial interventions for stroke family caregivers and stroke survivors: a systematic review and meta-analysis. Patient Educ Couns 2014;95:30–44.

67. Bakas T, Austin JK, Habermann B, et al. Telephone assessment and skill-building kit for stroke caregivers a randomized controlled clinical trial. Stroke 2015;46:3478–87.

68. Alim M, Lindley R, Felix C, et al. Family-led rehabilitation after stroke in India: the ATTEND trial, study protocol for a randomized controlled trial. Trials 2016;17:13.

69. Camicia M, Lutz B. Nursing’s role in successful transitions across settings. Stroke 2016. Forthcoming.

70. Chan L, Sandel ME, Jette AM, et al. Does postacute care site matter? A longitudinal study assessing functional recovery after a stroke. Arch Phys Med Rehabil 2013;94:622–9.

71. Kind AJ, Smith MA, Pandhi N, et al. Bouncing-back: rehospitalization in patients with complicated transitions in the first thirty days after hospital discharge for acute stroke. Home Health Care Serv Q 2007;26:37–55.

72. Bettger JP, Liang L, Xian Y, et al. Inpatient rehabilitation facility care reduces the likelihood of death and rehospitalization after stroke compared with skilled nursing facility care [abstract]. Stroke 2015; A146.

73. Camicia M, Black T, Farrell J, et al. The essential role of the rehabilitation nurse in facilitating care transitions: a white paper by the Association of Rehabilitation Nurses. Rehabil Nurs 2014;39:3–15.

74. Centers for Medicare and Medicaid. CMS quality strategy 2016. Accessed at www.cms.gov/medicare/quality-initiatives-patient-assessment-instruments/qualityinitiativesgeninfo/downloads/cms-quality-strategy.pdf.

Additional research is necessary to understand how the needs of caregivers change over time, the appropriate timing of reassessment, and the evaluation of interventions to facilitate the transition into this role, while preventing the adverse effects of caregiving on the health of the caregiver and stroke survivor during this transition period.

Conclusion

There is clear evidence that stroke caregiving can have detrimental effects on the physical, mental, and emotional health of caregivers, and that these effects are sustained over time. Evidence also indicates that caregivers who are not well-prepared to assume the caregiving role are more likely to experience negative outcomes. Studies suggest that the time of transition from inpatient care to home is a time of crisis for caregivers and that their support needs are high during this time. However, research also indicates that while needs may change over time, caregivers need ongoing support, especially if they are providing care for a stroke survivor who has moderate to severe physical, cognitive, and/or communication limitations.

In order to better understand the needs of stroke caregivers, a pre-discharge assessment of their readiness to provide care should be conducted so that interventions can be tailored to address their needs to minimize negative effects of a poorly planned transition [69]. Currently, there are assessment tools that can be used with caregivers post-discharge to assess their self-reported needs (after they have an understanding of the role) and caregiving outcomes. Research is needed to develop a valid and reliable tool thatpre-emptively assesses the gaps in caregiver readiness that can be utilized prior to the transition from the institutional setting to home. This will enable the identification and evaluation of primary prevention strategies to improve caregiver preparation so that the adaption to the new caregiving role can be expedited, minimizing the adverse health effects on both the caregiver and stroke survivor.

Providers must be aware of the changing needs of stroke survivors and tailor plans of care accordingly, using evidenced-based interventions. Policy makers must consider research on the long term effects of caregiving and consider legislation to support the health and respite needs of the growing population of caregivers. This will contribute to attaining the 3 aims of the National Quality Strategy: improving quality of care, improving health, and reducing health care system costs [74].

Corresponding author: Barbara J. Lutz, PhD, 601 S. College Rd., Wilmington, NC 28403, lutzb@uncw.edu.

Financial disclosures: None.