BACKGROUND: Parents often become the caregivers for their adult children with serious mental illness (SMI) due to the chronic and debilitating course of the illness and shortages in funding for community mental health services and residential placements. OBJECTIVE: To examine parents’ management styles when caring for adult children with SMI and parents’ perspectives on what type of community-based mental health interventions would support and/or enhance overall family functioning. DESIGN: A qualitative descriptive study using semistructured interviews with parents caring for adult children with SMI. The study was undergirded by Knafl and Deatrick’s Family Management Style Framework. RESULTS: Four major themes emerged from the data describing prolonged and difficult phases that parents and the family undergo in caring for an adult child with SMI. CONCLUSIONS: Successful management of these phases must include increasing access to mental health information, mental health screening, early interventions, and violence prevention for adult children and their families.
AschbrennerK. A.GreenbergJ. S.AllenS. A.SeltzerM. M. (2010). Subjective burden and personal gains among older parents of adults with serious mental illness. Psychiatric Services, 61, 605-611. doi:10.1176/ps.2010.61.6.605
2.
BeebeL. H. (2010). What community living problems do persons with schizophrenia report during periods of stability?Perspectives in Psychiatric Care, 46, 48-55. doi:10.1111/j.1744-6163.2009.00237.x
3.
BeeberA. S.ZimmermanS. (2012). Adapting the Family Management Style Framework for families caring for older adults with dementia. Journal of Family Nursing, 18, 123-145. doi:10.1177/1074840711427144
4.
BogartT.SolomonP. (1999). Procedures to share treatment information among mental health providers, consumers, and families. Psychiatric Services, 50, 1321-1325. doi:10.1176/ps.50.10.1321
5.
ChamplinB. E. (2009). Being there for another with a serious mental illness. Qualitative Health Research, 19, 1525-1535. doi:10.1177/1049732309349934
6.
ChanS. W. (2011). Global perspectives of burden of family caregivers for persons with schizophrenia. Archives of Psychiatric Nursing, 25, 339-349. doi:10.1016/j.apnu.2011.03.008
7.
ChangK. H.HorrocksS. (2006). Lived experiences of family caregivers of mentally ill relatives. Journal of Advanced Nursing, 53, 435-443. doi:10.1111/j.1365-2648.2006.03732.x
8.
ChenF.GreenbergJ. S. (2004). A positive aspect of caregiving: The influence of social support on caregiving gains for family members of relatives with schizophrenia. Community Mental Health Journal, 40, 423-435. doi:10.1023/B.COMH. 0000040656.89143.82
9.
CheslaC. A. (1989). Parents’ illness model of schizophrenia. Archives of Psychiatric Nursing, 3, 218-225.
10.
CheslaC. A. (1991). Parents caring practices with schizophrenia offspring. Qualitative Health Research, 1, 446-468. doi:10.1177/104973239100100404
11.
DixonL.AdamsC.LuckstedA. (2000). Update on family psychoeducation for schizophrenia. Schizophrenia Bulletin, 26, 5-20. doi:10.1093/oxfordjournals.schbul.a033446
12.
DixonL.LylesA.LehmanA.PostradoL.GoldmanH.McGlynnE. (1999). Services to families of adults with schizophrenia: From treatment recommendations to dissemination. Psychiatric Services, 50, 233-238. doi:10.1176/ps.50.2.233
13.
DixonL.McFarlaneW.LefleyH.LuckstedA.CohenM.FalloonI.. . . SondheimerD. (2001). Evidence-based practices for services to families of people with psychiatric disabilities. Psychiatric Services, 52, 903-910. doi:10.1176/appi.ps.52.7.903
14.
DoornbosM. M. (2001). The 24-7-52 job: Family caregiving for young adults with serious and persistent mental illness. Journal of Family Nursing, 7, 328-344. doi:10.1177/107484070100700402
15.
DoornbosM. M. (2002). Family caregivers and the mental health care system: Reality and dreams. Archives of Psychiatric Nursing, 16, 39-46. doi:10.1053/apnu.2002.30541
16.
DrapalskiA. L.MarshallT.SeyboltD.MedoffD.PeerJ.LeithJ.DixonL. (2008). Unmet needs of families of adults with mental illness and preferences regarding family services. Psychiatric Services, 59, 655-662. doi:10.1176/ps.2008.59.6.655
17.
FerriterM.HubandN. (2003). Experiences of parents with a son or daughter suffering from schizophrenia. Journal of Psychiatric and Mental Health Nursing, 10, 552-560. doi:10.1046/j.1365-2850.2003.00624.x
18.
GersonL. D.RoseL. E. (2012). Needs of persons with serious mental illness flowing discharge from inpatient treatment: Patient and family views. Archives of Psychiatric Nursing, 26, 261-271. doi:10.1016/j.apnu.2012.02.002
19.
GlynnS. M.CohenA. N.NivN. (2007). New challenges in family interventions for schizophrenia. Expert Review in Neurotherapeutics, 7, 33-47. doi:10.1586/ 14737175.7.1.33
20.
HendersonC.Evans-LackoS.ThornicroftG. (2013). Mental illness stigma, help-seeking, and public health programs. American Journal of Public Health, 103, 777-780. doi:10.2015/AJPH.2012.301056
21.
HendryxM.GreenC. A.PerrinN. A. (2009). Social support, activities, and recovery from serious mental illness: STARS study findings. Journal of Behavioral Health Services & Research, 36, 320-329. doi:10.1007/s11414-008-9151-1
22.
HueyL. Y.LefleyH. P.ShernD. L.WainscottC. A. (2007). Families and schizophrenia: The view from advocacy. Psychiatric Clinics of North America, 30, 549-566. doi:10.1016/j.psc.2007.04.006.
23.
JewellT. C.DowningD.McFarlaneW. R. (2009). Partnering with families: Multiple family group psychoeducation for schizophrenia. Journal of Clinical Psychology, 65, 868-878. doi:10.1002/jclp.20610
24.
Karnieli-MillerO.PerlickD. A.NelsonA.MattiasK.CorriganP.RoeD. (2013). Family members’ of persons living with a serious mental illness: Experiences and efforts to cope with stigma. Journal of Mental Health, 22, 254-262. doi:10.3109/09638237.2013.779368
25.
KaufmanA. V.ScoginF.MacNeilG.LeeperJ.WimberlyJ. (2010). Helping aging parents of adult children with serious mental illness. Journal of Social Service Research, 36, 445-459. doi:10.1080/01488376.2010.510949
26.
KnaflK.BreitmayerB.GalloA.ZoellerL. (1996). Family response to childhood chronic illness: Description of management styles. Journal of Pediatric Nursing, 11, 315-326. doi:10.1016/S0882-5963(05)80065-X
27.
KnaflK.DeatrickJ. A.GalloA.DixonJ.GreyM.KnaflG.O’MalleyJ. (2009). Assessment of the psychometric properties of the Family Management Measure. Journal of Pediatric Psychology, 36, 494-505. doi:10.1093/jpepsy/jsp034
28.
KnaflK.GillissK. (2002). Families and chronic illness: A synthesis of current research. Journal of Family Nursing, 8, 178-198. doi:10.1177/107484070200800302
29.
KnaflK. A.DeatrickJ. A. (1990). Family management behaviors: Concept analysis and refinement. Journal of Pediatric Nursing, 5, 15-22.
30.
KnaflK. A.DeatrickJ. A. (2003). Further refinement of the Family Management Style Framework. Journal of Family Nursing, 9, 232-256. doi:10.1177/1074840703255435
31.
KnaflK. A.DeatrickJ. A.GalloA. (2008). The interplay of concepts, data, and methods in the development of the Family Management Style Framework. Journal of Family Nursing, 14, 412-428. doi:10.1177/1074840708327138
32.
KnaflK. A.DeatrickJ. A.HavillN. L. (2012). Continued development of the Family Management Style Framework. Journal of Family Nursing, 18, 11-34. doi:10.1177/1074840711427294
33.
KreyenbuhlJ.BuchananR. W.DickersonF. B.DixonL. B. (2010). The Schizophrenia Patient Outcomes Research Team (PORT): Updated treatment recommendations 2009. Schizophrenia Bulletin, 36, 94-103. doi:10.1093/schbul/sbp130
34.
LehmanA. F.SteinwachsD. M., & the Co-Investigators of the PORT Project. (1998). At issue: Translating research into practice: The Schizophrenia Patient Outcomes Research Team (PORT) treatment recommendations. Schizophrenia Bulletin, 24, 1–10. doi:10.1093/oxfordjournals.schbul.a033303
35.
LevineI. S.LigenzaL. R. (2002). In their own voices: Families in crisis: A focus groups study of families of persons with serious mental illness. Journal of Psychiatric Practice, 8, 344-353. doi:10.1097/00131746-200211000-00004
36.
LincolnY. S.GubaE. G. (1985). Naturalistic inquiry. Newbury Park, CA: Sage.
37.
LucianoM.Del VecchioV.GiaccoD.De RosaC.MalangoneC.FiorilloA. (2012). A family affair? The impact of family psychoeducational interventions on depression. Expert Review in Neurotherapeutics, 12, 83-92. doi:10.1586/ern.11.131
38.
LysakerP. H.RoeD. (2012). The processes of recovery from schizophrenia: The emergent role of integrative psychotherapy, recent developments, and new directions. Journal of Psychotherapy Integration, 22, 287-297. doi:10.1037/a0029581
39.
MackayC.PakenhamK. (2011). Identification of stress and coping risk and protective factors associated with changes in adjustment to caring for an adult with mental illness. Journal of Clinical Psychology, 67, 1064-1079. doi:10.1002/jclp.20829
40.
McGovernJ. (2016). When actions speak louder than words: Extending the reach of qualitative data collecting. Global Qualitative Nursing Research, 3, 1-7. doi:10.1177/2333393616660260
41.
MichaelsP. J.CorriganP. W.BuchholzB.BrownJ.ArthurT.NetterC.McDonald-WilsonK. L. (2014). Changing stigma through a consumer-based stigma reduction program. Community Mental Health Journal, 50, 395-401. doi:10.1007/s10597-013-9628-0
42.
MilesM. B.HubermanA. M. (1994). Qualitative data analysis (2nd ed.). Thousand Oaks, CA: Sage.
43.
MilesM. B.HubermanA. M.SaldanaJ. (2014). Qualitative data analysis: A method sourcebook (3rd ed.). Washington, DC: Sage.
44.
MuhlbauerS. A. (2002). Navigating the storm of mental illness: Phases in the family’s journey. Qualitative Health Research, 12, 1076-1092. doi:10.1177/ 104973202129120458
45.
OstacherM. J.NierenbergA. A.IosifescuD. V.EidelP.LundH. G.AmetranoR. M., . . . The Step-BD Family Experience Collaborative Study Group. (2008). Correlates of subjective and objective burden among caregivers of patients with bipolar disorder. Acta Psychiatrica Scandinavica, 118, 49-56. doi:10.1111/j.1600-0447.2008.01201.x
46.
PerlickD. A.NelsonA. H.MattiasK.SelzerJ.KalvinC.WilburC. H.. . . CorriganP. W. (2011). In our own voice-family companion: Reducing self-stigma of family members of persons with serious mental illness. Psychiatric Services, 62, 1456-1462. doi:10.1176/appi.ps001222011
47.
PerlickD. A.RosenheckR. A.ClarkinJ. F.RaueP.SireyJ. (2001). Impact of family burden and patient symptom status on clinical outcome in bipolar affective disorder. Journal of Nervous and Mental Disease, 189, 31-37. doi:10.1097/ 00005053-200101000-00006
48.
PrinceJ. D. (2005). Family involvement and satisfaction with community mental health care of individuals with schizophrenia. Community Mental Health Journal, 41, 419-430. doi:10.1007/s10597-005-5078-7
49.
ProvencherH. L.PerreaultM.St-OngeM.RousseauM. (2003). Predictors of psychological distress in family caregivers of persons with psychiatric disabilities. Journal of Psychiatric and Mental Health Nursing, 10, 592-607. doi:10.1046/j.1365-2850.2003.00623.x
50.
RiebschlegerJ.ScheildJ.LuzC.MickusM.LiszeskiC.EatonM. (2008). How are the experiences and needs of families of individuals with mental illness reflected in medical education guidelines?Academic Psychiatry, 32, 119-126. doi:10.1176/appi.ap.32.2.119
51.
RimmermanA.ShabatS.WinstokZ. (2003). Parental attitudes towards offspring’s return home after psychiatric hospitalization. International Journal of Rehabilitation Research, 26, 61-65. doi:10.1077/00004356-200303000-00009
52.
RungreangkulkijS.GillissC. L. (2000). Conceptual approaches to studying family caregiving for persons with severe mental illness. Journal of Family Nursing, 6, 341-366. doi:10.1177/107484070000600403
53.
SandelowskiM. (1995). Qualitative analysis: What it is and how to begin. Research in Nursing & Health, 18, 37-375. doi:10.1002/nur.4770180411240X(199808)21:4%3C375::AID-NUR9%3E3.3.CO;2-2
54.
SandelowskiM. (2000). Whatever happened to qualitative description?Research in Nursing & Health, 23, 334-340. doi:10.1002/1099-240X(20008)23:4%3C334::AID-NUR9%3E3.0.CO;2-G
SaundersJ. C. (2003). Families living with severe mental illness: A literature review. Issues in Mental Health Nursing, 24, 175-198. doi:10.1080/01612840305301
57.
ScharerK. (2002). What parents of mentally ill children need and want from mental health professionals. Issues in Mental Health Nursing, 23, 617-640. doi:10.1080/01612840290052758
58.
ShermanM. D.FischerE.BowlingU. B.DixonL.RidenerL.HarrisonD. (2009). A new engagement strategy in a VA-based family psychoeducation program. Psychiatric Services, 60, 254-257. doi:10.1176/ps2009.60.2.254
59.
ShorR.BirnbaumM. (2012). Meeting unmet needs of families of persons with mental illness: Evaluation of a family peer support helpline. Community Mental Health Journal, 48, 482-488. doi:10.1007/s10597-012-9504-3
60.
SpaniolL.ZippleA. M. (1988). Family and professional perceptions of family needs and coping strengths. Rehabilitation Psychology, 33, 37-45. doi:10.1037/ h0091680
61.
SteinC. H.AguirreR.HuntM. G. (2013). Social networks and personal loss among young adults with mental illness and their parents: A family perspective. Psychiatric Rehabilitation Journal, 36, 15-21. doi:10.1037/h0094742
62.
St-HilaireA.HillC. L.DohertyN. M. (2007). Coping in parents of schizophrenia patients with differing degrees of familial exposure to psychosis. Journal of Nervous and Mental Disease, 195, 596-600. doi:10.1097/NMD.0b013e318093f475
Sullivan-BolyaiS.BovaC.HarperD. (2005). Developing and refining interventions in persons with health disparities: The use of qualitative description. Nursing Outlook, 53, 127-133. doi:10.1016/j.outlook.2005.03.005
65.
WiegandD. L.DeatrickJ. A.KnaflK. A. (2008). Family management styles related to withdrawal of life-sustaining therapy from adults who are acutely ill or injured. Journal of Family Nursing, 14, 16-32. doi:10.1177/1074840707313338
66.
WillisD. G.Sullivan-BolyaiS.KnaflK.CohenM. Z. (2016). Distinguishing features and similarities between descriptive phenomenological and qualitative description research. Western Journal of Nursing Research, 38, 1185-204. doi:10.1177/0193945916645499
67.
WrightA.JormA. F.MackinnonA. J. (2011). Labeling of mental disorders and stigma in young people. Social Science & Medicine, 73, 498-506. doi:10.1016/ j.socscimed.2011.06.015
68.
ZauszniewskiJ. A.BekhetA. K.SureskyM. J. (2009). Effects of resilience of women Family caregivers of adults with serious mental illness: The role of positive cognitions. Archives of Psychiatric Nursing, 23, 412-422. doi:10.1016/j.apnu. 2008.12.004
