Meaning in caregiving plays an influential role in stroke family caregiver’s perception and adaptation to caregiving. Although the role meaning plays in stroke family caregiving has been recognized, knowledge about this subject among the Chinese population is fragmented and sparse. Therefore, a hermeneutic phenomenological study was conducted as a first step in a program of research focused on Chinese caregivers utilizing a purposive sample of five stroke family caregivers living in China to explore the meaning of the lived caregiving experience. Data were collected through in-depth interviews and analyzed by a phenomenological hermeneutic interpretation. Meaning in stroke family caregiving was interpreted as suffering, an obligation, a personal choice, a meaningful opportunity, and a natural part of living. These meanings were dynamic and interconnected and were affected deeply by the Chinese culture in how caregivers experience, interpret, and cope with caregiving. Findings highlight the need to understand the culture-shaped meanings in caregiving to better support family caregivers and develop culturally tailored interventions.
AnnellsM. (1996). Hermeneutic phenomenology: Philosophical perspectives and current use in nursing research. Journal of Advanced Nursing, 23, 705-713. https://doi.org/10.1111/j.1365-2648.1996.tb00041.x
2.
AuA.ShardlowS. M.TengY.TsienT.ChanC. (2012). Coping strategies and social support-seeking behaviour among Chinese caring for older people with dementia. Ageing & Society, 33, 1422-1441. https://doi.org/10.1017/s0144686x12000724
3.
BäckströmB.AsplundK.SundinK. (2010). The meaning of middle-aged female spouses’ lived experience of the relationship with a partner who has suffered a stroke, during the first year postdischarge. Nursing Inquiry, 17, 257-268. https://doi.org/10.1111/j.1440-1800.2010.00490.x
4.
BäckströmB.SundinK. (2007). The meaning of being a middle-aged close relative of a person who has suffered a stroke, 1 month after discharge from a rehabilitation clinic. Nursing Inquiry, 14, 243-254. https://doi.org/10.1111/j.1440-1800.2007.00373.x
5.
CamakD. J. (2015). Addressing the burden of stroke caregivers: A literature review. Journal of Clinical Nursing, 24, 2376-2382. https://doi.org/10.1111/jocn.12884
6.
CameronJ. I.StewartD. E.StreinerD. L.CoyteP. C.CheungA. M. (2014). What makes family caregivers happy during the first 2 years post stroke?Stroke, 45, 1084-1089. https://doi.org/10.1161/STROKEAHA.113.004309
7.
Dilworth-AndersonP.WilliamsI. C.GibsonB. E. (2002). Issues of race, ethnicity, and culture in caregiving research: A 20-year review (1980-2000). The Gerontologist, 42, 237-272. https://doi.org/10.1093/geront/42.2.237
8.
FangY.TaoQ.ZhouX.ChenS.HuangJ.JiangY.. . . ChanC. C. (2017). Patient and family member factors influencing outcomes of poststroke inpatient rehabilitation. Archives of Physical Medicine and Rehabilitation, 98, 249-255e2. https://doi.org/10.1016/j.apmr.2016.07.005
FeiginV. L.RothG. A.NaghaviM.ParmarP.KrishnamurthiR.ChughS.. . . ShiueI. (2016). Global burden of stroke and risk factors in 188 countries, during 1990-2013: A systematic analysis for the Global Burden of Disease Study 2013. The Lancet Neurology, 15, 913-924. https://doi.org/10.1016/S1474-4422(16)30073-4
GadamerH. G. (1975). Truth and method (BardenG.CummingJ., Trans.). New York, NY: Crossroad.
13.
GauglerJ. E. (2010). The longitudinal ramifications of stroke caregiving: A systematic review. Rehabilitation Psychology, 55, 108-125. https://doi.org/10.1037/a0019023
14.
HanM. (2015, January). Exploring caregiving-related distress among family caregivers of a person with mental illness and the role of culture among Chinese, Vietnamese and Caucasians. Society for Social Work and Research 19th Annual Conference: The Social and Behavioral Importance of Increased Longevity, SSWR, New Orleans, LA.
JaraczK.Grabowska-FudalaB.GórnaK.JaraczJ.MoczkoJ.KozubskiW. (2015). Burden in caregivers of long-term stroke survivors: Prevalence and determinants at 6 months and 5 years after stroke. Patient Education and Counseling, 98, 1011-1016. https://doi.org/10.1016/j.pec.2015.04.008
17.
JessupN. M.BakasT.McLennonS. M.WeaverM. T. (2015). Are there gender, racial or relationship differences in caregiver task difficulty, depressive symptoms and life changes among stroke family caregivers?Brain Injury, 29, 17-24. https://doi.org/10.3109/02699052.2014.947631
18.
KamelA. A.BondE.FroelicherE. S. (2009). Stroke patients’ caregivers: Their experiences and needs: A qualitative literature review. Jordan Medical Journal, 43, 341-350. https://doi.org/10.1111/j.1440-172x.2012.02011.x
19.
KavanaghK. H.KennedyP. H. (1992). Promoting cultural diversity: Strategies for health care professionals. Newbury Park, CA: SAGE.
20.
KlemmD. E. (1983). The hermeneutical theory of Paul Ricoeur. A constructive analysis. Lewisburg, PA: Bucknell University Press.
21.
KnightB. G.SayeghP. (2010). Cultural values and caregiving: The updated sociocultural stress and coping model. The Journals of Gerontology, Series B: Psychological Sciences & Social Sciences, 65B, 5-13. https://doi.org/10.1093/geronb/gbp096
LangdridgeD. (2007). Phenomenological psychology: Theory, research and method. Harlow, UK: Pearson Education.
24.
LazarusR. S.FolkmanS. (1984). Stress, appraisal, and coping. New York, NY: Springer.
25.
LeeR. L. T.MokE. S. B. (2011). Seeking harmony in the provision of care to the stroke-impaired: Views of Chinese family caregivers. Journal of Clinical Nursing, 20, 1436-1444. https://doi.org/10.1111/j.1365-2702.2010.03500.x
26.
LindsethA.NorbergA. (2004). A phenomenological hermeneutical method for researching lived experience. Scandinavian Journal of Caring Sciences, 18, 145-153. https://doi.org/10.1111/j.1471-6712.2004.00258.x
27.
LiuY.InselK. C.ReedP. G.CristJ. D. (2012). Family caregiving of older Chinese people with dementia: Testing a model. Nursing Research, 61, 39-50. https://doi.org/10.1097/nnr.0b013e31823bc451
28.
MackenzieA.GreenwoodN. (2012). Positive experiences of caregiving in stroke: A systematic review. Disability and Rehabilitation, 34, 1413-1422. https://doi.org/10.3109/09638288.2011.650307
29.
MarshallC.RossmanG. B. (2016). Designing qualitative research (6th ed.). Los Angeles, CA: SAGE.
30.
McLennonS. M.HabermannB.RiceM. (2011). Finding meaning as a mediator of burden on the health of caregivers of spouses with dementia. Aging & Mental Health, 15, 522-530. https://doi.org/10.1080/13607863.2010.543656
31.
MiyawakiC. E. (2015). Association of filial responsibility, ethnicity, and acculturation among Japanese American family caregivers of older adults. Journal of Applied Gerontology, 36, 296-319. https://doi.org/10.1177/0733464815581484
32.
NoonanA. E.TennstedtS. L. (1997). Meaning in caregiving and its contribution to caregiver well-being. The Gerontologist, 37, 785-794. https://doi.org/10.1093/geront/37.6.785
33.
OlaiL.BorgquistL.SvärdsuddK. (2015). Life situations and the care burden for stroke patients and their informal caregivers in a prospective cohort study. Upsala Journal of Medical Sciences, 120, 290-298. https://doi.org/10.3109/03009734.2015.1049388
34.
ParkC. L. (2010). Making sense of the meaning literature: An integrative review of meaning making and its effects on adjustment to stressful life events. Psychological Bulletin, 136, 257-301. https://doi.org/10.1037/a0018301
35.
PerssonJ.HolmegaardL.KarlbergI.RedforsP.JoodK.JernC.. . . Forsberg-WärlebyG. (2015). Spouses of stroke survivors report reduced health-related quality of life even in long-term follow-up: Results from Sahlgrenska Academy Study on ischemic stroke. Stroke, 46, 2584-2590. https://doi.org/10.1161/strokeaha.115.009791
36.
PierceL. L. (2001). Caring and expressions of spirituality by urban caregivers of people with stroke in African American families. Qualitative Health Research, 11, 339-352. https://doi.org/10.1177/104973230101100305
37.
QiuX.SitJ. W.KooF. K. (2018). The influence of Chinese culture on family caregivers of stroke survivors: A qualitative study. Journal of Clinical Nursing, 27, e309-e319. https://doi.org/10.1111/jocn.13947
38.
QuinnC.ClareL.McGuinnessT.WoodsR. T. (2012). The impact of relationships, motivations, and meanings on dementia caregiving outcomes. International Psychogeriatrics, 24, 1816-1826. https://doi.org/10.1017/s1041610212000889
39.
QuinnC.ClareL.WoodsR. T. (2010). The impact of motivations and meanings on the wellbeing of caregivers of people with dementia: A systematic review. International Psychogeriatrics, 22, 43-55. https://doi.org/10.1017/s1041610209990810
40.
RehnsfeldtA.ErikssonK. (2004). The progression of suffering implies alleviated suffering. Scandinavian Journal of Caring Sciences, 18, 264-272. https://doi.org/10.1111/j.1471-6712.2004.00281.x
41.
RekerG. T.PeacockE. J.WongP. T. P. (1987). Meaning and purpose in life and well-being: A life-span perspective. Journal of Gerontology, 42, 44-49. https://doi.org/10.1093/geronj/42.1.44
RicoeurP. (1974). Existence and hermeneutics. In IhdeD. (Ed.), The conflict of interpretations: Essays in hermeneutics. Evanston, IL: Northwestern University Press.
44.
RicoeurP. (1976). Interpretation theory: Discourse and the surplus of meaning. Fort Worth, TX: Texas University Press.
45.
RothD. L.FredmanL.HaleyW. E. (2015). Informal caregiving and its impact on health: A reappraisal from population-based studies. The Gerontologist, 55, 309-319. https://doi.org/10.1093/geront/gnu177
SoskolneV.Halevy-LevinS.CohenA. (2007). The socio-cultural context of family caregiving and psychological distress: A comparison of immigrant and non-immigrant caregivers in Israel. Aging & Mental Health, 11, 3-13. https://doi.org/10.1080/13607860600641127
WallengrenC.FribergF.SegestenK. (2008). Like a shadow—On becoming a stroke victim’s relative. Scandinavian Journal of Caring Sciences, 22, 48-55. https://doi.org/10.1111/j.1471-6712.2006.00494.x
50.
WallengrenC.SegestenK.FribergF. (2008). Struggling for freedom—Lived experiences of being a relative of a stroke survivor in the first six months after hospital discharge. International Journal of Qualitative Studies on Health and Well-Being, 3, 230-238. https://doi.org/10.1080/17482620802166278
51.
WongD. F. K.LiJ. C. M. (2014). Cultural influence on Shanghai Chinese people’s help-seeking for mental health problems: Implications for social work practice. British Journal of Social Work, 44, 868-885. https://doi.org/10.1093/bjsw/bcs180
52.
YenW. J.TengC. H.HuangX. Y.MaW. F.LeeS.TsengH. C. (2010). A theory of meaning of caregiving for parents of mentally ill children in Taiwan, a qualitative study. Journal of Clinical Nursing, 19, 259-265. https://doi.org/10.1111/j.1365-2702.2009.02984.x
53.
YuS. F.ChengS. T.WangJ. (2018). Unravelling positive aspects of caregiving in dementia: An integrative review of research literature. International Journal of Nursing Studies, 79, 1-26. https://doi.org/10.1016/j.ijnurstu.2017.10.008
