Family caregivers play an integral role in supporting patient self-management, yet how they perform this role is unclear. We conducted a qualitative metasynthesis of family caregivers’ processes to support patient self-management of chronic, life-limiting illness and factors affecting their support. Methods included a systematic literature search, quality appraisal of articles, data abstraction, and data synthesis to produce novel themes. Thirty articles met inclusion criteria, representing 935 international family caregivers aged 18 to 89 years caring for patients with various health conditions. Three themes characterized family caregivers’ processes to support patient self-management: “Focusing on the Patient’s Illness Needs,” “Activating Resources to Support Oneself as the Family Caregiver,” and “Supporting a Patient Living with a Chronic, Life-Limiting Illness.” Factors affecting family caregivers’ support included Personal Characteristics, Health Status, Resources, Environmental Characteristics, and the Health Care System. The family caregiver role in supporting patient self-management is multidimensional, encompassing three processes of care and influenced by multiple factors.
ApplebaumA. J.KulikowskiJ. R.BreitbartW. (2015). Meaning-centered psychotherapy for cancer caregivers (MCP-C): Rationale and overview. Palliative and Supportive Care, 13(6), 1631–1641. https://doi.org/10.1007/978-3-319-41397-6_12
2.
BaerW. M.HansonL. C. (2000). Families’ perception of the added value of hospice in the nursing home. Journal of the American Geriatrics Society, 48(8), 879–882. https://doi.org/10.1111/j.1532-5415.2000.tb06883.x
3.
BarlowJ.WrightC.SheasbyJ.TurnerA.HainsworthJ. (2002). Self-management approaches for people with chronic conditions: A review. Patient Education and Counseling, 48(2), 177–187. https://doi.org/10.1016/S0738-3991(02)00032-0
4.
CameronJ.RhodesK. L.SkiC. F.ThompsonD. R. (2015). Carers’ views on patient self-care in chronic heart failure. Journal of Clinical Nursing, 25(1–2), 144–152. https://doi.org/10.1111/jocn.13124
CorryM.WhileA.NeenanK.SmithV. (2015). A systematic review of systematic reviews on interventions for caregivers of people with chronic conditions. Journal of Advanced Nursing, 71(4), 718–734. https://doi.org/10.1111/jan.12523
Dionne-OdomJ. N.TaylorR.RocqueG.ChamblessC.RamseyT.AzueroA.IkankovaN.MartinM. Y.BakitasM. A. (2018). Adapting an early palliative care intervention to family caregivers of persons with advanced cancer in the rural deep south: A qualitative formative evaluation. Journal of Pain and Symptom Management, 55(6), 1519–1530. https://doi.org/10.1016/j.jpainsymman.2018.02.009
9.
EtkindS. N.BoneA. E.LovellN.HigginsonI. J.MurtaghF. E. M. (2018). Influences on care preferences of older people with advanced illness: A systematic review and thematic synthesis. Journal of the American Geriatrics Society, 66(5), 1031–1039. https://doi.org/10.1111/jgs
10.
FeastA.Moniz-CookE.StonerC.CharlesworthG.OrrellM. (2016). A systematic review of the relationship between behavioral and psychological symptoms (BPSD) and caregiver well-being. International Psychogeriatrics, 28(11), 1761–1774. https://doi.org/10.1017/S1041610216000922
11.
FexA.FlensnerG.EkA.-C.SöderhamnO. (2011). Living with an adult family member using advanced medical technology at home. Nursing Inquiry, 18(4), 336–347. https://doi.org/10.1111/j.1440-1800.2011.00535.x
12.
FujinamiR.Otis-greenS.KleinL.SidhuR.FerrellB. (2012). Quality of life of family caregivers and challenges faced in caring for patients with lung cancer. Clinical Journal of Oncology Nursing, 16(6), E210–E220. https://doi.org/10.1188/12.CJON.E210-E220
13.
GarlandA.JeonS.-H.StepnerM.RotermannM.FransooR.WunschH.ScalesD. C.IwashynaT. J.SanmartinC. (2019). Effects of cardiovascular and cerebrovascular health events on work and earnings: A population-based retrospective cohort study. CMAJ, 191(1), E3–E10. https://doi.org/10.1503/cmaj.181238
14.
GollaH.MammeasS.GalushkoM.PfaffH.VoltzR. (2015). Unmet needs of caregivers of severely affected multiple sclerosis patients: A qualitative study. Palliative and Supportive Care, 13(6), 1685–1693. https://doi.org/10.1017/S1478951515000607
15.
GreyM.KnaflK.McCorkleR. (2006). A framework for the study of self- and family management of chronic conditions. Nursing Outlook, 54(5), 278–286. https://doi.org/10.1016/j.outlook.2006.06.004
GyselsM. H.HigginsonI. J. (2009). Caring for a person in advanced illness and suffering from breathlessness at home: Threats and resources. Palliative and Supportive Care, 7(2), 153–162. https://doi.org/10.1017/S1478951509000200
18.
HoldenR. J.SchubertC. C.MickelsonR. S. (2015). The patient work system: An analysis of self-care performance barriers among elderly heart failure patients and their informal caregivers. Applied Ergonomics, 47, 133–150. http://doi.org/10.1016/j.apergo.2014.09.009
JohnstonB. M.MilliganS.FosterC.KearneyN. (2012). Self-care and end of life care — patients’ and carers’ experience a qualitative study utilising serial triangulated interviews. Supportive Care in Cancer, 20(8), 1619–1627. https://doi.org/10.1007/s00520-011-1252-3
KanterC.AgostinoN. M. D.DanielsM.StoneA.EdelsteinK. (2014). Together and apart : Providing psychosocial support for patients and families living with brain tumors. Supportive Care in Cancer, 22(1), 43–52. https://doi.org/10.1007/s00520-013-1933-1
25.
KeesingS.RosenwaxL. (2011). Is occupation missing from occupational therapy in palliative care?Australian Occupational Therapy Journal, 58(5), 329–336. https://doi.org/10.1111/j.1440-1630.2011.00958.x
26.
KutnerJ. S.KilbournK. M.CosternaroA.LeeC. A.NowelsC.VancuraJ. L.AndersonD.KeechT. E. (2009). Support needs of informal hospice caregivers: A qualitative study. Journal of Palliative Medicine, 12(12), 1337–1342. https://doi.org/10.1089/jpm.2009.0178
27.
LillyM. B.RobinsonC. A.HoltzmanS.BottorffJ. L. (2011). Can we move beyond burden and burnout to support the health and wellness of family caregivers to persons with dementia? Evidence from British Columbia, Canada. Health & Social Care in the Community, 20(1), 103–112. https://doi.org/10.1111/j.1365-2524.2011.01025.x
28.
LoC.IlicD.TeedeH.CassA.FulcherG.GallagherM.KerrP. G.MurphyK.PolkinghorneK.RussellG.UsherwoodT.WalkerR.ZoungasS. (2016). The perspectives of patients on health-care for co-morbid diabetes and chronic kidney disease: A qualitative study. PLOS ONE, 11(1), Article e0146615. https://doi.org/10.1371/journal.pone.0146615
29.
LockieS. J.BottorffJ. L.RobinsonC. A.PesutB. (2010). Experiences of rural family caregivers who assist with commuting for palliative care. Canadian Journal of Nursing Research, 42(1), 74–91.
30.
Martinez-MarcosM.De la Cuesta-BenjumeaC. (2014). Women’s self-management of chronic illnesses in the context of caregiving: A grounded theory study. Journal of Clinical Nursing, 24(11–12), 1557–1566. https://doi.org/10.1111/jocn.12746
31.
MasonB.NantonV.EpiphaniouE.MurrayS. A.DonaldsonA.ShipmanC.DavesonB. A.HardingR.HigginsonI. J.MundayD.BarclayS.DaleJ.KendallM.WorthA.BoydK. (2016). “My body’s falling apart.” Understanding the experiences of patients with advanced multimorbidity to improve care: Serial interviews with patients and carers. BMJ Supportive and Palliative Care, 6(1), 60–65. https://doi.org/10.1136/bmjspcare-2013-000639
32.
MastersS.Oliver-BaxterJ.BartonC.SummersM.HowardS.RoegerL.ReedR. (2013). Programmes to support chronic disease self-management: Should we be concerned about the impact on spouses?Health & Social Care in the Community, 21(3), 315–326. https://doi.org/10.1111/hsc.12020
33.
MoherD.LiberatiA.TetzlaffJ.AltmanA., & the PRISMA Group. (2009). Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement. Annals of Internal Medicine, 151(4), 264–269. https://doi.org/10.7326/0003-4819-151-4-200908180-00135
34.
Morales-AsencioJ. M.Martin-SantosF. J.KaknaniS.Morilla-HerreraJ. C.Cuevas Fernández-GallegoM.García-MayorS.León-CamposÁ.Morales-GilI. M. (2014). Living with chronicity and complexity: Lessons for redesigning case management from patients’ life stories—A qualitative study. Journal of Evaluation in Clinical Practice, 22(1), 122–132. https://doi.org/10.1111/jep.12300
NguyenL.KeshavjeeK.ArcherN.PattersonC.Gwadry-SridharF.DemersC. (2017). Barriers to technology use among older heart failure individuals in managing their symptoms after hospital discharge. International Journal of Medical Informatics, 105, 136–142. https://doi.org/10.1016/j.ijmedinf.2017.06.001
37.
OchoaC. Y.Buchanan LunsfordN.Lee SmithJ. (2019). Impact of informal cancer caregiving across the cancer experience: A systematic literature review of quality of life. Palliative & Supportive Care, 18(2), 220–240. https://doi.org/10.1017/S1478951519000622
38.
PappaK.DotyT.TaffS. D.KniepmannK.FosterE. R. (2017). Self-management program participation and social support in Parkinson’s disease: Mixed methods evaluation. Physical & Occupational Therapy in Geriatrics, 35(2), 81–98. https://doi.org/10.1080/02703181.2017.1288673
39.
PaskettE.ThompsonB.AmmermanA. S.OrtegaA. N.MarstellerJ.RichardsonD. (2016). Multilevel interventions to address health disparities show promise in improving population health. Health Affairs, 35(8), 1429–1434. https://doi.org/10.1377/hlthaff.2015.1360
40.
PerzynskiA. T.RamseyR. K.Colón-ZimmermannK.CageJ.WelterE.SajatovicM. (2017). Barriers and facilitators to epilepsy self-management for patients with physical and psychological co-morbidity. Chronic Illness, 13(3), 188–203. https://doi.org/10.1177/1742395316674540
41.
RetrumJ. H.NowelsC. T.BekelmanD. B. (2013). Patient and caregiver congruence: The importance of dyads in heart failure care. Journal of Cardiovascular Nursing, 28(2), 129–136. https://doi.org/10.1097/JCN.0b013e3182435f27
RolleyJ.SmithJ.DiGiacomoM.SalamonsonY.DavidsonP. (2011). The caregiving role following percutaneous coronary intervention. Journal of Clinical Nursing, 20(1–2), 227–235. https://doi.org/10.1111/j.1365-2702.2009.03104.x
44.
SamsonA.SiamH. (2008). Adapting to major chronic illness: A proposal for a comprehensive task-model approach. Patient Education and Counseling, 70(3), 426–429. https://doi.org/10.1016/j.pec.2007.10.018
45.
SandelowskiM.BarrosoM. (2007). Handbook for synthesizing qualitative research. Springer.
46.
SavageS.DunningT.DugganN.MartinP. (2015). The experiences and needs of family carers of people with diabetes at the end of life. Journal of Hospice and Palliative Nursing, 17(4), 293–300. https://doi.org/10.1089/jpm.2013.0265
47.
Schulman-GreenD.JaserS.MartinF.AlonzoA.GreyM.McCorkleR.RedekerN. S.ReynoldsN.WhittenmoreR. (2012). Processes of self-management in chronic illness. Journal of Nursing Scholarship, 44(2), 136–144. https://doi.org/10.1111/j.1547-5069.2012.01444.x
48.
Schulman-GreenD.JaserS. S.ParkC.WhittemoreR. (2016). A metasynthesis of factors affecting self-management of chronic illness. Journal of Advanced Nursing, 72(7), 1469–1489. https://doi.org/10.1111/jan.12902
49.
SchulzR.BeachS. R.FriedmanE. M.MartsolfG. R.RodakowskiJ.JamesA. E. (2017). Changing structures and processes to support family caregivers of seriously ill patients. Journal of Palliative Medicine, 21(S2), S–36. https://doi.org/10.1089/jpm.2017.0437
50.
ShamseerL.MoherD.ClarkeM.GhersiD.LiberatiA.PetticrewM.ShekelleP.StewartL. A., & the PRISMA-P Group. (2015). Preferred reporting items for systematic review and meta-analysis protocols (PRISMA-P) 2015: Elaboration and explanation. British Medical Journal, 349, g7647. https://doi.org/10.1136/bmj.g7647
51.
SussmanT.MccuskerJ.YaffeM.BelzileE.SewitchM.ColeM.StrumpfE. (2016). Family members’ or friends’ involvement in self-care for patients with depressive symptoms and co-morbid chronic conditions. Chronic Illness, 12(3), 182–198. https://doi.org/10.1177/1742395316633510
52.
WangY.HaugenT.SteihaugS.WernerA. (2012). Patients with acute exacerbation of chronic obstructive pulmonary disease feel safe when treated at home: A qualitative study. BMC Pulmonary Medicine, 12, 45. https://doi.org/10.1186/1471-2466-12-45
53.
WardN. J.JowseyT.HaoraP. J.AspinC.YenL. E. (2011). With good intentions: Complexity in unsolicited informal support for Aboriginal and Torres Strait Islander peoples. A qualitative study. BMC Public Health, 11(1), 686. https://doi.org/10.1186/1471-2458-11-686
54.
WhiteheadL.JacobE.TowellA.Abu-qamarM.Cole-HeathA. (2018). The role of the family in supporting the self-management of chronic conditions: A qualitative systematic review. Journal of Clinical Nursing, 27(1–2), 22–30. https://doi.org/10.1111/jocn.13775
55.
WilliamsA.DugglebyW.EbyJ.CooperR. D.HallstromL. K.HoltslanderL.ThomasR. (2013). Hope against hope: Exploring the hopes and challenges of rural female caregivers of persons with advanced cancer. BMC Palliative Care, 12(1), 44. https://doi.org/10.1186/1472-684X-12-44
56.
WinghamJ.FrostJ.BrittenN.JollyK.GreavesC.AbrahamC.DalalH. (2015). Needs of caregivers in heart failure management: A qualitative study. Chronic Illness, 11(4), 304–319. https://doi.org/10.1177/1742395315574765
Supplementary Material
Please find the following supplemental material available below.
For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.
For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.
