Social support is an important mechanism for improving self-management, although little is known about its role in epilepsy self-management. We examined the type of support provided to people with epilepsy and its influence on self-management. We conducted in-depth interviews with 22 people with epilepsy and 16 support persons, representing 14 pairs and 10 unpaired individuals. We analyzed the data using principles of grounded theory. Supporters, who were mainly parents and spouses, aided people with epilepsy in every dimension of self-management. Support for self-management occurred along a continuum from person with epilepsy-led management to support person-led management. Where the pairs fell on the continuum depended on developmental stage, relationship type, and relationship dynamics. Seizure control shaped individuals’ experiences with self-management and support within each group. The self-management continuum provides a new aspect that can be integrated into existing models of self- and family management.
BanduraA. (1995). Self-efficacy in changing societies. Cambridge: Cambridge University Press.
2.
BanduraA. (2004). Health promotion by social cognitive means. Health Education & Behavior, 31, 143–164. doi:10.1177/1090198104263660
3.
BarlowJ.WrightC.SheasbyJ.TurnerA.HainsworthJ. (2002). Self-management approaches for people with chronic conditions: A review. Patient Education and Counseling, 48, 177–187. doi:10.1016/S0738-3991(02)00032-0
4.
BaylissE. A.EllisJ. L.SteinerJ. F. (2007). Barriers to self-management and quality-of-life outcomes in seniors with multimorbidities. Annals of Family Medicine, 5, 395–402. doi:10.1370/Afm.722
5.
BoeijeH. (2002). A purposeful approach to the constant comparative method in the analysis of qualitative interviews. Quality & Quantity, 36, 391–409.
6.
BressiC.CornaggiaC. M.BeghiM.PorcellanaM.IandoliI. I.InvernizziG. (2007). Epilepsy and family expressed emotion: Results of a prospective study. Seizure, 16, 417–423. doi:10.1016/j.seizure.2007.02.015
7.
Centers for Disease Control and Prevention. (2012). Epilepsy in adults and access to care–United States, 2010. Morbidity and Mortality Weekly Report, 61, 909–913. Retrieved from www.cdc.gov/mmwr/preview/mmwrhtml/mm6145a2.htm
8.
ClarkN. M. (2003). Management of chronic disease by patients. Annual Review of Public Health, 24, 289–313. doi:10.1146/annurev.publhealth.24.100901.141021
9.
CohenS.UnderwoodL. G.GottliebB. (2000). Social support measurement and intervention. New York: Oxford University Press.
10.
CorbinJ. M.StraussA. (1988). Unending work and care: Managing chronic illness at home. San Francisco: Jossey-Bass.
11.
CorbinJ.StraussA. (2008). Basics of qualitative research: Techniques and procedures for developing grounded theory (3rd ed.). Thousand Oaks, CA: SAGE.
12.
CreswellJ. W.ClarkV. L. P. (2007). Designing and conducting mixed methods research. Thousand Oaks, CA: SAGE.
13.
DevinskyO. (1999). Patients with refractory seizures. New England Journal of Medicine, 340, 1565–1570. doi:10.1056/NEJM199905203402008
14.
DiIorioC. (1997). Epilepsy self-management. In GochmanD. S. (Ed.), Handbook of health behavior research II: Provider determinants (pp. 213–230). New York: Plenum Press.
15.
DiIorioC.ShaferP.LetzR.HenryT.SchomerD.YeagerK. (2004). Project EASE: A study to test a psychosocial model of epilepsy medication management. Epilepsy & Behavior, 5, 926–936. doi:10.1016/j.yeb-eh.2004.08.011
16.
DiMatteoM. R. (2004a). Social support and patient adherence to medical treatment: A meta-analysis. Health Psychology, 23, 207–218. doi:10.1037/0278-6133.23.2.207
17.
DiMatteoM. R. (2004b). Variations in patients’ adherence to medical recommendations: A quantitative review of 50 years of research. Medical Care, 42, 200–209. doi:10.1097/01.mlr.0000114908.90348.f9
18.
DiMatteoM. R.LepperH. S.CroghanT. W. (2000). Depression is a risk factor for noncompliance with medical treatment: Meta-analysis of the effects of anxiety and depression on patient adherence. Archives of Internal Medicine, 160, 2101–2107. doi:10.1001/archinte.160.14.2101
19.
DunbarS. B.ClarkP. C.QuinnC.GaryR. A.KaslowN. J. (2008). Family influences on heart failure self-care and outcomes. Journal of Cardiovascular Nursing, 23, 258–265. doi:10.1097/01.JCN.0000305093.20012.b8
20.
Dunbar-JacobJ.Mortimer-StephensM. K. (2001). Treatment adherence in chronic disease. Journal of Clinical Epidemiology, 54, S57–S60. doi:10.1016/S0895-4356(01)00457-7
FisherR. S.VickreyB. G.GibsonP.HermannB.PenovichP.SchererA.WalkerS. (2000). The impact of epilepsy from the patient’s perspective I. Descriptions and subjective perceptions. Epilepsy Research, 41, 39–51. doi:10.1016/S0920-1211(00)00126-1
23.
FranksM. M.StephensM. A. P.RookK. S.FranklinB. A.KeteyianS. J.ArtinianN. T. (2006). Spouses’ provision of health-related support and control to patients participating in cardiac rehabilitation. Journal of Family Psychology, 20, 311–318. doi:10.1037/0893-3200.20.2.311
24.
GallagherR.LuttikM. L.JaarsmaT. (2011). Social support and self-care in heart failure. Journal of Cardiovascular Nursing, 26, 439–445. doi:10.1097/JCN.0b013e31820984e1
25.
GallantM. P. (2003). The influence of social support on chronic illness self-management: A review and directions for research. Health Education and Behavior, 30, 170–195. doi:10.1177/1090198102251030
26.
GallantM. P.SpitzeG. D.ProhaskaT. R. (2007). Help or hindrance? How family and friends influence chronic illness self-management among older adults. Research on Aging, 29, 375–409. doi:10.1177/0164027507303169
27.
GlaserB.StraussA. (1967). The discovery of grounded theory: Strategies for qualitative research. Chicago: Aldine.
28.
GreyM.KnaflK.McCorkleR. (2006). A framework for the study of self- and family management of chronic conditions. Nursing Outlook, 54, 278–286. doi:10.1016/j.outlook.2006.06.004
29.
HannaK. M. (2012). A framework for the youth with type 1 diabetes during the emerging adulthood transition. Nursing Outlook, 60, 401–410. doi:10.1016/j.outlook.2011.10.005
30.
HeaneyC. A.IsraelB. A. (2008). Social networks and social support. In GlanzK.RimerB. K.ViswanathK. (Eds.), Health behavior and health education: Theory, research, and practice. (4th ed., pp. 189–210). San Francisco: Jossey-Bass.
31.
HovingaC. A.AsatoM. R.ManjunathR.WhelessJ. W.PhelpsS. J.ShethR. D. . . . HaskinsL. S. (2008). Association of non-adherence to antiepileptic drugs and seizures, quality of life, and productivity: Survey of patients with epilepsy and physicians. Epilepsy & Behavior, 13, 316–322. doi:10.1016/j.yebeh.2008.03.009
32.
JerantA. F.von Friederichs-FitzwaterM. M.MooreM. (2005). Patients’ perceived barriers to active self-management of chronic conditions. Patient Education and Counseling, 57, 300–307. doi:10.1016/j.pec.2004.08.004
33.
JettenJ.HaslamC.HaslamS. A.DingleG.JonesJ. M. (2014). How groups affect our health and well-being: The path from theory to policy. Social Issues and Policy Review, 8, 103–130. doi:10.1111/sipr.12003
34.
LangfordC. P.BowsherJ.MaloneyJ. P.LillisP. P. (1997). Social support: A conceptual analysis. Journal of Advanced Nursing, 25, 95–100. doi:10.1046/j.1365-2648.1997.1997025095.x
35.
MAXQDA. (1989–2014). [Computer software for qualitative data analysis]. Berlin: VERBI GmbH.
36.
McLeroyK. R.BibeauD.StecklerA.GlanzK. (1988). An ecological perspective on health promotion programs. Health Education Quarterly, 15, 351–377. doi:10.1177/109019818801500401
37.
NovickG. (2008). Is there a bias against telephone interviews in qualitative research?Research in Nursing & Health, 31, 391–398. doi:10.1002/nur.20259
38.
OsterbergL.BlaschkeT. (2005). Adherence to medication. New England Journal of Medicine, 353, 487–497. doi:10.1056/NEJMra050100
39.
PaschalA. M.RushS. E.SadlerT. (2013). Factors associated with medication adherence in patients with epilepsy and recommendations for improvement. Epilepsy & Behavior, 31, 346–350. doi:10.1016/j.yebeh.2013.10.002
40.
PattonM. Q. (2002). Qualitative research and evaluation methods (Vol. 3). Thousand Oaks, CA: SAGE.
41.
PlankA.MazzoniV.CavadaL. (2012). Becoming a caregiver: New family carers’ experience during the transition from hospital to home. Journal of Clinical Nursing, 21, 2072–2082. doi:10.1111/j.1365-2702.2011.04025.x
42.
ReesJ.O’BoyleC.MacDonaghR. (2001). Quality of life: Impact of chronic illness on the partner. Journal of the Royal Society of Medicine, 94, 563–566. Retrieved from www.ncbi.nlm.nih.gov/pmc/articles/PMC1282240/
43.
RobinsonE.DiIorioC.DePadillaL.McCartyF.YeagerK.HenryT. . . . ShaferP. (2008). Psychosocial predictors of lifestyle management in adults with epilepsy. Epilepsy & Behavior, 13, 523–528. doi:10.1016/j.yebeh.2008.05.015
RoslandA. M.HeislerM.ChoiH.SilveiraM.PietteJ. D. (2010). Family influences on self-management among functionally independent adults with diabetes or heart failure: Do family members hinder as much as they help?Chronic Illness, 6, 22–33. doi:10.1177/1742395309354608
46.
RoslandA. M.HeislerM.PietteJ. D. (2012). The impact of family behaviors and communication patterns on chronic illness outcomes: A systematic review. Journal of Behavioral Medicine, 35, 221–239. doi:10.1007/s10865-011-9354-4
47.
RoslandA. M.KiefferE.IsraelB.CofieldM.PalmisanoG.SincoB. . . . HeislerM. (2008). When is social support important? The association of family support and professional support with specific diabetes self-management behaviors. Journal of General Internal Medicine, 23, 1992–1999. doi:10.1007/s11606-008-0814-7
48.
RyanP.SawinK. J. (2009). The individual and family self-management theory: Background and perspectives on context, process, and outcomes. Nursing Outlook, 57, 217–225.e6. doi:10.1016/j.outlook.2008.10.004
49.
SableC.FosterE.UzarkK.BjornsenK.CanobbioM. M.ConnollyH. M. . . . WilliamsR. G. (2011). Best practices in managing transition to adulthood for adolescents with congenital heart disease: The transition process and medical and psychosocial issues: A scientific statement from the American Heart Association. Circulation, 123, 1454–1485. doi:10.1161/CIR.0b013e3182107c56
50.
SayersS. L.RiegelB.PawlowskiS.CoyneJ. C.SamahaF. F. (2008). Social support and self-care of patients with heart failure. Annals of Behavioral Medicine, 35, 70–79. doi:10.1007/s12160-007-9003-x
51.
SchiotzM. L.BogelundM.AlmdalT.JensenB. B.WillaingI. (2012). Social support and self-management behaviour among patients with type 2 diabetes. Diabetes Medicine, 29, 654–661. doi:10.1111/j.1464-5491.2011.03485.x
52.
SnowD. (2004). Thoughts on alternative pathways to theoretical development: Theory generation, extension, and refinement. In RaginC. C.NagelJ.WhiteP. (Eds.), Workshop on scientific foundations of qualitative research (pp. 133–136). Washington, DC: National Science Foundation.
53.
StokolsD. (1996). Translating social ecological theory into guidelines for community health promotion. American Journal of Health Promotion, 10, 282–298. doi:10.4278/0890-1171-10.4.282
54.
SturgesJ. E.HanrahanK. J. (2004). Comparing telephone and face-to-face qualitative interviewing: A research note. Qualitative Research, 4, 107–118. doi:10.1177/1468794104041110
55.
TappD. M. (2004). Dilemmas of family support during cardiac recovery: Nagging as a gesture of support. Western Journal of Nursing Research, 26, 561–580. doi:10.1177/0193945904265425
56.
TriefP. M. (2003). Describing support: A qualitative study of couples living with diabetes. Families, Systems, & Health, 21, 57–67. doi:10.1037/h0089502
57.
UchinoB. N. (2006). Social support and health: A review of physiological processes potentially underlying links to disease outcomes. Journal of Behavioral Medicine, 29, 377–387. doi:10.1007/s10865-006-9056-5
58.
WalkerE. R.BampsY.BurdettA.RothkopfJ.DiIorioC. (2012). Social support for self-management behaviors among people with epilepsy: A content analysis of the WebEase program. Epilepsy & Behavior, 23, 285–290. doi:10.1016/j.yebeh.2012.01.006
59.
WalkerE. R.EngelhardG.BarmonC.McGeeR. E.SterkC. E.DiiorioC.ThompsonN. J. (2014). A mixed methods analysis of support for self-management behaviors: Perspectives of people with epilepsy and their support providers. Epilepsy & Behavior, 31, 152–159. doi:10.1016/j.yebeh.2013.11.023
60.
Westphal-GuittiA. C.AlonsoN. B.MiglioriniR. C.da SilvaT. I.AzevedoA. M.CabocloL. O.YacubianE. M. (2007). Quality of life and burden in caregivers of patients with epilepsy. Journal of Neuroscience Nursing, 39, 354–360.
