Facilitating pathways to care: A qualitative study of the self-reported needs and coping skills of caregivers of young adults diagnosed with early psychosis.
care pathways
carers/families
coping
early intervention
qualitative methodology
Journal
Journal of psychiatric and mental health nursing
ISSN: 1365-2850
Titre abrégé: J Psychiatr Ment Health Nurs
Pays: England
ID NLM: 9439514
Informations de publication
Date de publication:
Aug 2020
Aug 2020
Historique:
received:
15
07
2019
revised:
07
01
2020
accepted:
08
01
2020
pubmed:
14
1
2020
medline:
13
5
2021
entrez:
14
1
2020
Statut:
ppublish
Résumé
WHAT IS KNOWN ON THE SUBJECT?: In clinical psychiatry and mental health nursing practice, family caregivers are known to provide the bulk of care and play an important role in facilitating recovery outcomes for their loved ones diagnosed with psychosis. Providing services and interventions to family caregivers is as important as to patients in the early stage of psychotic experience for having a beneficial impact on the patients' clinical and social outcomes. Limited qualitative research has focused on family caregivers' subjective views of what they need during the critical period to identify early warning signs and connect their loved ones to professional help as they have no prior experience in caring for persons with psychosis. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: Using qualitative analysis of family caregiver focus groups, this manuscript provides readers in clinical nursing practice with an understanding of family caregivers' lived experiences of supporting their loved one diagnosed with early psychosis. Understanding family caregivers' caregiving unmet needs in supporting their loved one diagnosed with early psychosis could inform both the technology-assisted intervention development and nursing practice in improving family-centred care and facilitate self-management practice. IMPLICATIONS FOR MENTAL HEALTH NURSING: Psychiatry and mental health nursing has long been engaged with the health and well-being of individuals with psychosis and supporting their families in the development, evaluation and implementation of innovative approaches to patient and family education. Digital technologies designed to deliver tailored intervention for family caregivers are underdeveloped, and the present study identifies a number of potential features that could comprise technology to meet the needs of this population. ABSTRACT: Introduction Caregivers play a critical role in detecting and managing psychotic symptoms before young people diagnosed with early psychosis present to care. Little is known about the specific needs of caregivers in navigating pathways to care for their loved one. Aim The purpose of this study was to understand the needs of family caregivers and their ways of coping on the pathway to care for early psychosis. Method Twenty family caregivers of individuals diagnosed with early psychosis participated in three focus groups that explored caregiving needs provision for early psychosis. Thematic analysis was conducted. Results We identified four major themes: education and skill training; raising wider awareness, such as police offers and teachers; adopting technologies for coping; and effective coping strategies. Implications for practice These findings provide important insights into caregiving needs and the ways for nurses to address those needs and better equip carers to recognize early symptoms, monitor behaviour changes and navigate care to support people with first-episode psychosis. Nursing researchers can use the information to develop on-demand and tailored family-centred intervention in addressing caregivers' needs in education, increasing awareness of early psychosis and fostering effective coping strategies.
Types de publication
Journal Article
Langues
eng
Pagination
368-379Subventions
Organisme : Sigma Theta Tau International Honor Society of Nursing
Informations de copyright
© 2020 John Wiley & Sons Ltd.
Références
Addington, J., Collins, A., McCleery, A., & Addington, D. (2005). The role of family work in early psychosis. Schizophrenia Research, 79(1), 77-83. https://doi.org/10.1016/j.schres.2005.01.013
Bedi, G., Carrillo, F., Cecchi, G. A., Slezak, D. F., Sigman, M., Mota, N. B., … Corcoran, C. M. (2015). Automated analysis of free speech predicts psychosis onset in high-risk youths. NPJ Schizophrenia, 1, 15030. https://doi.org/10.1038/npjschz.2015.30
Ben-Zeev, D., Brian, R., Wang, R., Wang, W., Campbell, A. T., Aung, M. S. H., … Scherer, E. A. (2017). CrossCheck: Integrating self-report, behavioral sensing, and smartphone use to identify digital indicators of psychotic relapse. Psychiatr Rehabilitation Journal, 40(3), 266-275. https://doi.org/10.1037/prj0000243
Birchwood, M. (2000). Early intervention and sustaining the management of vulnerability. Australian and New Zealand Journal of Psychiatry, 34(Suppl), S181-184. https://doi.org/10.1080/000486700241
Bowman, S., Alvarez-Jimenez, M., Wade, D., McGorry, P., & Howie, L. (2014). Forgotten family members: The importance of siblings in early psychosis. Early Intervention in Psychiatry, 8(3), 269-275. https://doi.org/10.1111/eip.12068
Cella, M., He, Z., Killikelly, C., Okruszek, L., Lewis, S., & Wykes, T. (2019). Blending active and passive digital technology methods to improve symptom monitoring in early psychosis. Early Intervention in Psychiatry, 13(5), 1271-1275. https://doi.org/10.1111/eip.12796
Chan, S. K., Tse, S., Sit, H. L., Hui, C. L., Lee, E. H., Chang, W. C., & Chen, E. Y. (2016). Web-based psychoeducation program for caregivers of first-episode of psychosis: An experience of chinese population in Hong Kong. Frontier Psychology, 7, 2006. https://doi.org/10.3389/fpsyg.2016.02006
Cheng, S. C., & Schepp, K. G. (2016). Early intervention in Schizophrenia: A literature review. Archives of Psychiatry Nursing, 30(6), 774-781. https://doi.org/10.1016/j.apnu.2016.02.009
Conus, P., Lambert, M., Cotton, S., Bonsack, C., McGorry, P. D., & Schimmelmann, B. G. (2010). Rate and predictors of service disengagement in an epidemiological first-episode psychosis cohort. Schizophrenia Research, 118(1-3), 256-263. https://doi.org/10.1016/j.schres.2010.01.032
Corcoran, C. M., Carrillo, F., Fernández-Slezak, D., Bedi, G., Klim, C., Javitt, D. C., … Cecchi, G. A. (2018). Prediction of psychosis across protocols and risk cohorts using automated language analysis. World Psychiatry, 17(1), 67-75. https://doi.org/10.1002/wps.20491
Dixon, L. B., Holoshitz, Y., & Nossel, I. (2016). Treatment engagement of individuals experiencing mental illness: Review and update. World Psychiatry, 15(1), 13-20. https://doi.org/10.1002/wps.20306
Doyle, R., Turner, N., Fanning, F., Brennan, D., Renwick, L., Lawlor, E., & Clarke, M. (2014). First-episode psychosis and disengagement from treatment: A systematic review. Psychiatric Services, 65(5), 603-611. https://doi.org/10.1176/appi.ps.201200570
Gleeson, J., Lederman, R., Koval, P., Wadley, G., Bendall, S., Cotton, S., … Alvarez-Jimenez, M. (2017). Moderated online social therapy: A model for reducing stress in carers of young people diagnosed with mental health disorders. Frontier Psychology, 8, 485. https://doi.org/10.3389/fpsyg.2017.00485
Gupta, A., Solanki, R. K., Koolwal, G. D., & Gehlot, S. (2015). Psychological well-being and burden in caregivers of patients with schizophrenia. International Journal of Public Health Research, 4(1), 70-76.
Hartzler, A. L., Taylor, M. N., Park, A., Griffiths, T., Backonja, U., McDonald, D. W., … Pratt, W. (2016). Leveraging cues from person-generated health data for peer matching in online communities. Journal of the American Medical Informatics Association, 23(3), 496-507. https://doi.org/10.1093/jamia/ocv175
Higgins, A., Doyle, L., Downes, C., Morrissey, J., Costello, P., Brennan, M., & Nash, M. (2016). There is more to risk and safety planning than dramatic risks: Mental health nurses' risk assessment and safety-management practice. International Journal of Mental Health Nursing, 25(2), 159-170. https://doi.org/10.1111/inm.12180
Higgins, A., Doyle, L., Morrissey, J., Downes, C., Gill, A., & Bailey, S. (2016). Documentary analysis of risk-assessment and safety-planning policies and tools in a mental health context. International Journal of Mental Health Nursing, 25(4), 385-395. https://doi.org/10.1111/inm.12186
Ho, B. C., Andreasen, N. C., Flaum, M., Nopoulos, P., & Miller, D. (2000). Untreated initial psychosis: Its relation to quality of life and symptom remission in first-episode schizophrenia. American Journal of Psychiatry, 157(5), 808-815. https://doi.org/10.1176/appi.ajp.157.5.808
International (2005). International Clinical practice guidelines for early psychosis. British Journal of Psychiatry Suppl, 48, s120-124. https://doi.org/10.1192/bjp.187.48.s120.
Kirkbride, J. B., Hameed, Y., Ankireddypalli, G., Ioannidis, K., Crane, C. M., Nasir, M., … Jones, P. B. (2017). The epidemiology of first-episode psychosis in early intervention in psychosis services: findings from the social epidemiology of psychoses in East Anglia (SEPEA) study. American Journal of Psychiatry, 174(2), 143-153. https://doi.org/10.1176/appi.ajp.2016.16010103
Kline, E., Thompson, E., Demro, C., Bussell, K., Reeves, G., & Schiffman, J. (2016). Self-report instruments for clinical monitoring of psychosis risk states. Psychiatric Services, 67(4), 456-459. https://doi.org/10.1176/appi.ps.201500063
Knodel, J. (1993). The design and analysis of focus group studies: A practical approach. Successful Focus Groups: Advancing the State of the Art, 1, 35-50.
Koutra, K., Triliva, S., Roumeliotaki, T., Stefanakis, Z., Basta, M., Lionis, C., & Vgontzas, A. N. (2014). Family functioning in families of first-episode psychosis patients as compared to chronic mentally ill patients and healthy controls. Psychiatry Research, 219(3), 486-496. https://doi.org/10.1016/j.psychres.2014.06.045
Krebs, P., & Duncan, D. T. (2015). Health app use among US mobile phone owners: A national survey. JMIR mHealth and uHealth, 3(4), e101-e101. https://doi.org/10.2196/mhealth.4924
Krueger, R. A. (1997). Analyzing and reporting focus group results, Vol. 6. London, UK: Sage publications.
Krueger, R. A., & Casey, M. A. (2000). Focus Groups. A Practical Guide for Applied Research (3rd ed.). Thousand Oaks, CA: Sage Publications.
Kuipers, E., Onwumere, J., & Bebbington, P. (2010). Cognitive model of caregiving in psychosis. British Journal of Psychiatry, 196(4), 259-265. https://doi.org/10.1192/bjp.bp.109.070466
Kumar, D., Tully, L. M., Iosif, A. M., Zakskorn, L. N., Nye, K. E., Zia, A., & Niendam, T. A. (2018). A mobile health platform for clinical monitoring in early psychosis: Implementation in community-based outpatient early psychosis care. JMIR Ment Health, 5(1), e15. https://doi.org/10.2196/mental.8551
Kumar, G., Sood, M., Verma, R., Mahapatra, A., & Chadda, R. K. (2019). Family caregivers' needs of young patients with first episode psychosis: A qualitative study. International Journal of Social Psychiatry, 65(5), 435-442. https://doi.org/10.1177/0020764019852650
Lai, A. M., Hsueh, P. Y. S., Choi, Y. K., & Austin, R. R. (2017). Present and future trends in consumer health informatics and patient-generated health data. Yearbook of Medical Informatics, 26(1), 152-159. https://doi.org/10.15265/IY-2017-016
Lal, S., Malla, A., Marandola, G., Thériault, J., Tibbo, P., Manchanda, R., … Banks, N. (2019). "Worried about relapse": Family members' experiences and perspectives of relapse in first-episode psychosis. Early Intervention in Psychiatry, 13(1), 24-29. https://doi.org/10.1111/eip.12440
Lanham, M., Ridgeway, K., Dayton, R., Castillo, B. M., Brennan, C., Davis, D. A., … Evens, E. (2019). "We're going to leave you for last, because of how you are": Transgender Women's experiences of gender-based violence in healthcare, education, and police encounters in Latin America and the Caribbean. Violence Gend, 6(1), 37-46. https://doi.org/10.1089/vio.2018.0015
Laranjo, L., Dunn, A. G., Tong, H. L., Kocaballi, A. B., Chen, J., Bashir, R., … Coiera, E. (2018). Conversational agents in healthcare: A systematic review. Journal of the American Medical Informatics Association, 25(9), 1248-1258. https://doi.org/10.1093/jamia/ocy072
Leavy, P. (2014). The Oxford handbook of qualitative research. Oxford, UK: Oxford University Press.
Lobban, F., Glentworth, D., Chapman, L., Wainwright, L., Postlethwaite, A., Dunn, G., … Haddock, G. (2013). Feasibility of a supported self-management intervention for relatives of people with recent-onset psychosis: REACT study. British Journal of Psychiatry, 203(5), 366-372. https://doi.org/10.1192/bjp.bp.112.113613
Lobban, F., Glentworth, D., Haddock, G., Wainwright, L., Clancy, A., & Bentley, R. (2011). The views of relatives of young people with psychosis on how to design a Relatives Education And Coping Toolkit (REACT). Journal of Mental Health, 20(6), 567-579. https://doi.org/10.3109/09638237.2011.593592
Ma, C. F., Chien, W. T., & Bressington, D. T. (2018). Family intervention for caregivers of people with recent-onset psychosis: A systematic review and meta-analysis. Early Intervention in Psychiatry, 12(4), 535-560. https://doi.org/10.1111/eip.12494
Marshall, M., Lewis, S., Lockwood, A., Drake, R., Jones, P., & Croudace, T. (2005). Association between duration of untreated psychosis and outcome in cohorts of first-episode patients: A systematic review. Archives of General Psychiatry, 62(9), 975-983. https://doi.org/10.1001/archpsyc.62.9.975
McCann, T. V., & Lubman, D. I. (2014). Qualitative process evaluation of a problem-solving guided self-help manual for family carers of young people with first-episode psychosis. BMC Psychiatry, 14, 168. https://doi.org/10.1186/1471-244x-14-168
McCann, T. V., Lubman, D. I., & Clark, E. (2011). First-time primary caregivers' experience of caring for young adults with first-episode psychosis. Schizophrenia Bulletin, 37(2), 381-388. https://doi.org/10.1093/schbul/sbp085
Napa, W., Tungpunkom, P., & Pothimas, N. (2017). Effectiveness of family interventions on psychological distress and expressed emotion in family members of individuals diagnosed with first-episode psychosis: A systematic review. JBI Database Systematic Reviews and Implementation Reports, 15(4), 1057-1079. https://doi.org/10.11124/jbisrir-2017-003361
Naslund, J. A., Marsch, L. A., McHugo, G. J., & Bartels, S. J. (2015). Emerging mHealth and eHealth interventions for serious mental illness: A review of the literature. Journal of Mental Health, 24(5), 321-332. https://doi.org/10.3109/09638237.2015.1019054
Nilsen, L., Frich, J. C., Friis, S., & Rossberg, J. I. (2014). Patients' and family members' experiences of a psychoeducational family intervention after a first episode psychosis: A qualitative study. Issues in Mental Health Nursing, 35(1), 58-68. https://doi.org/10.3109/01612840.2013.837992
Onwumere, J., Amaral, F., & Valmaggia, L. R. (2018). Digital technology for caregivers of people with psychosis: Systematic review. JMIR Mental Health, 5(3), e55. https://doi.org/10.2196/mental.9857
Perkins, D. O., Gu, H., Boteva, K., & Lieberman, J. A. (2005). Relationship between duration of untreated psychosis and outcome in first-episode schizophrenia: A critical review and meta-analysis. American Journal of Psychiatry, 162(10), 1785-1804. https://doi.org/10.1176/appi.ajp.162.10.1785
Petrakis, M., & Laxton, S. (2017). Intervening early with family members during first-episode psychosis: An evaluation of mental health nursing psychoeducation within an inpatient unit. Archives of Psychiatry Nursing, 31(1), 48-54. https://doi.org/10.1016/j.apnu.2016.07.015
Reed, S. I. (2008). First-episode psychosis: A literature review. International Journal of Mental Health Nursing, 17(2), 85-91. https://doi.org/10.1111/j.1447-0349.2008.00515.x
Riley, G., Gregory, N., Bellinger, J., Davies, N., Mabbott, G., & Sabourin, R. (2011). Carer's education groups for relatives with a first episode of psychosis: An evaluation of an eight-week education group. Early Intervention in Psychiatry, 5(1), 57-63. https://doi.org/10.1111/j.1751-7893.2010.00195.x
Rodriguez, J., Olin, S., Hoagwood, K. E., Shen, S., Burton, G., Radigan, M., & Jensen, P. S. (2011). The development and evaluation of a parent empowerment program for family peer advocates. Journal of Child and Family Studies, 20(4), 397-405. https://doi.org/10.1007/s10826-010-9405-4
Rotondi, A. J., Anderson, C. M., Haas, G. L., Eack, S. M., Spring, M. B., Ganguli, R., … Rosenstock, J. (2010). Web-based psychoeducational intervention for persons with schizophrenia and their supporters: One-year outcomes. Psychiatric Services, 61(11), 1099-1105. https://doi.org/10.1176/ps.2010.61.11.1099
Rotondi, A. J., Haas, G. L., Anderson, C. M., Newhill, C. E., Spring, M. B., Ganguli, R., … Rosenstock, J. B. (2005). A clinical trial to test the feasibility of a telehealth psychoeducational intervention for persons with schizophrenia and their families: Intervention and 3-month findings. Rehabilitation Psychology, 50(4), 325-336. https://doi.org/10.1037/0090-5550.50.4.325
Sadath, A., Muralidhar, D., Varambally, S., Gangadhar, B., & Jose, J. P. (2017). Do stress and support matter for caring? The role of perceived stress and social support on expressed emotion of carers of persons with first episode psychosis. Asian Journal of Psychiatry, 25, 163-168. https://doi.org/10.1016/j.ajp.2016.10.023
Sampogna, G., Bakolis, I., Evans-Lacko, S., Robinson, E., Thornicroft, G., & Henderson, C. (2017). The impact of social marketing campaigns on reducing mental health stigma: Results from the 2009-2014 Time to Change programme. European Psychiatry, 40, 116-122. https://doi.org/10.1016/j.eurpsy.2016.08.008
Sin, J., & Norman, I. (2013). Psychoeducational interventions for family members of people with schizophrenia: a mixed-method systematic review. The Journal of Clinical Psychiatry, 74(12), e1145-62.
Spencer, L., Potterton, R., Allen, K., Musiat, P., & Schmidt, U. (2019). Internet-based interventions for carers of individuals with psychiatric disorders, neurological disorders, or brain injuries: Systematic review. Journal of Medical Internet Research, 21(7), e10876-e10876. https://doi.org/10.2196/10876
Swartz, M. K. (2017). A strength-based approach to care. Journal of Pediatric Health Care, 31(1), 1. https://doi.org/10.1016/j.pedhc.2016.10.008
Tong, A., Sainsbury, P., & Craig, J. (2007). Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care, 19(6), 349-357. https://doi.org/10.1093/intqhc/mzm042
Walsh, S., Golden, E., & Priebe, S. (2016). Systematic review of patients' participation in and experiences of technology-based monitoring of mental health symptoms in the community. British Medical Journal Open, 6(6), e008362. https://doi.org/10.1136/bmjopen-2015-008362
Wibeck, V., Dahlgren, M. A., & Öberg, G. (2007). Learning in focus groups: An analytical dimension for enhancing focus group research. Qualitative Research, 7(2), 249-267. https://doi.org/10.1177/1468794107076023
Wright, L. M., & Leahey, M. (2012). Nurses and families: A guide to family assessment and intervention. Philadelphia, PA: FA Davis.
Yesufu-Udechuku, A., Harrison, B., Mayo-Wilson, E., Young, N., Woodhams, P., Shiers, D., … Kendall, T. (2015). Interventions to improve the experience of caring for people with severe mental illness: Systematic review and meta-analysis. British Journal of Psychiatry, 206(4), 268-274. https://doi.org/10.1192/bjp.bp.114.147561