Social work support and unmet social needs in life after stroke: a cross-sectional exploratory study

Sophie Lehnerer, Benjamin Hotter, Inken Padberg, Petra Knispel, Dike Remstedt, Andrea Liebenau, Ulrike Grittner, Ian Wellwood, Andreas Meisel, BSA Long Term Care Study Group, Sophie Lehnerer, Benjamin Hotter, Inken Padberg, Petra Knispel, Dike Remstedt, Andrea Liebenau, Ulrike Grittner, Ian Wellwood, Andreas Meisel, BSA Long Term Care Study Group

Abstract

Background: Stroke patients are often affected by long-term disabilities with needs concerning social issues. There is relatively little consideration of social recovery of patients and the support required to return to work, receive social benefits, participate in daily life activities, maintain contact with family and friends and to organize financial affairs. In our study we aimed to investigate if existing tools record social needs adequately. We analyzed the current provision of social support provided in long-term care after stroke and whether unmet social needs were associated with quality of life, caregiver burden, overall function and degree of disability.

Methods: Our analysis is part of the Managing Aftercare of Stroke study (MAS-I), a cross-sectional exploratory study of patient needs 2-3 years after initial stroke. Assessment tools included the Nikolaus-score (social situation), the EuroQoL (quality of life), the German Burden Scale for Family Caregivers (caregiver burden), the modified Rankin Scale (disability / dependence), Stroke Impact Scale (function and degree of disability) and the Stroke Survivor Needs Questionnaire (unmet needs).

Results: Overall 57 patients were included in MAS-I, with ten patients classified in urgent need of socio-economic support according to the Nikolaus-score. Patients with lower than normal Nikolaus-score had a higher degree of disability. Thirty percent of all patients had never received professional social support. Social worker contact happened mostly during the stay in acute hospital or rehabilitation institution. Only four patients (11%) reported long-term support after discharge. Apart from social worker contact during acute care, 43% of patients had unmet needs in the long-term aftercare. Forty percent of all patients included in MAS-I were recommended for social work intervention after an in-depth analysis of their situation. Finally, we saw that unmet social needs were associated with lower quality of life and higher caregiver burden.

Conclusions: Our data suggest significant unmet needs in social care in long-term stroke patients. Screening tools for unmet social needs such as the Nikolaus-score do not holistically report patients' needs.

Trial registration: Clinicaltrials.Gov NCT02320994 . Registered 19 December 2014 (retrospectively registered).

Keywords: Assessment tools; Long-term care; Screening social work; Social situation; Stroke; Unmet social needs.

Conflict of interest statement

Author Andreas Meisel is an editorial board member of BMC Neurology.

References

    1. World Health Organization The world health report 2002. Midwifery. 2003;19:72–73. doi: 10.1054/midw.2002.0343.
    1. Feigin VL, Norrving B, Mensah GA. Global burden of stroke. Circ Res. 2017;120(03):439–448. doi: 10.1161/CIRCRESAHA.116.308413.
    1. Feigin VL, et al. Update on the global burden of ischemic and hemorrhagic stroke in 1990–2013: the GBD 2013 study. Neuroepidemiology. 2015;45(03):161–176. doi: 10.1159/000441085.
    1. Siegel Jason, Edwards Emily, Mooney Lesia, Smith Christina, Peel J. Brent, Dole Adam, Maler Paul, Freeman W. David. A feasibility pilot using a mobile personal health assistant (PHA) app to assist stroke patient and caregiver communication after hospital discharge. mHealth. 2016;2:31–31. doi: 10.21037/mhealth.2016.08.02.
    1. Ellis G, Mant J, Langhorne P, et al. Stroke liaison workers for stroke patients and carers: an individual patient data meta-analysis. Cochrane Database Syst Rev. 2010. p. CD005066.
    1. Fearon P, Langhorne P. Early supported discharge Trialists. Services for reducing duration of hospital care for acute stroke patients. Cochrane Database Syst Rev. 2012. p. CD000443.
    1. Fisher RJ, Gaynor C, Kerr M, et al. A consensus on stroke: early supported discharge. 2011. pp. 1392–1397.
    1. Summers D, Leonard A, Wentworth D, et al. Comprehensive overview of nursing and interdisciplinary care of the acute ischemic stroke patient: a scientific statement from the American Heart Association. Stroke. 2009;40:2911–2944. doi: 10.1161/STROKEAHA.109.192362.
    1. Schwamm LH, Pancioli A, Acker JE, et al. Recommendations for the establishment of stroke systems of care: recommendations from the American Stroke Association's task force on the development of Stroke systems. Stroke. 2005;36:690–703. doi: 10.1161/01.STR.0000158165.42884.4F.
    1. Winstein CJ, Stein J, Arena R, et al. Guidelines for adult Stroke rehabilitation and recovery: a guideline for healthcare professionals from the American Heart Association/American Stroke Association. Stroke. 2016;47:e98–e16. doi: 10.1161/STR.0000000000000098.
    1. Hotter B, Liebenau A, Knispel P, Heel S, Steube D, Wissel J, Wellwood I, Meisel A. Identifying unmet needs in long-term stroke care using indepth assessment and the post-Stroke-checklist – the managing aftercare for Stroke (MAS-I) study. European Stroke Journal. 2018.
    1. Dewan B, et al. A service evaluation of the feasibility of a community-based consultant and stroke navigator review of health and social care needs in stroke survivors 6 weeks after hospital discharge. Clin Med. 2014;14(2):123–140. doi: 10.7861/clinmedicine.14-2-134.
    1. Wray F, Clarke D, Forster A. Post-stroke self-management interventions: a systematic review of effectiveness and investigation of the inclusion of stroke survivors with aphasia. Disabil Rehabil. 2018;40(11):1237–1251. doi: 10.1080/09638288.2017.1294206.
    1. Kumar S, Selim MH, Caplan LR. Medical complications after stroke. Lancet Neurol. 2010;9:105–118. doi: 10.1016/S1474-4422(09)70266-2.
    1. Godecke E, Ciccone NA, Granger AS, Rai T, West D, Cream A, Cartwright J, Hankey GJ. A comparison of aphasia therapy outcomes before and after a very early rehabilitation programme following stroke. Int J Lang Commun Disord. 2014;49(2):149–161. doi: 10.1111/1460-6984.12074.
    1. Wissel J, Verrier M, Simpson DM, Charles D, Guinto P, Papapetropoulos S, Sunnerhagen KS. Post-stroke spasticity: predictors of early development and considerations for therapeutic intervention. PM R. 2015;7(1):60–67. doi: 10.1016/j.pmrj.2014.08.946.
    1. Delpont B, Blanc C, Osseby GV, Hervieu-Bègue M, Giroud M, Béjot Y. Pain after stroke: A review. Rev Neurol. S0035–3787(17)30658–6.
    1. Watila MM, Balarabe SA. Factors predicting post-stroke aphasia recovery. J Neurol Sci. 2015;352(1–2):12–18.
    1. Nabavi SF, Turner A, Dean O, Sureda A, Mohammad S. Post-stroke depression therapy: where are we now? Curr Neurovasc Res. 2014;11(3):279–289. doi: 10.2174/1567202611666140522123504.
    1. Rogers JM, Foord R, Stolwyk RJ, Wong D, Wilson PH. General and domain-specific effectiveness of cognitive remediation after Stroke: systematic literature review and meta-analysis. Neuropsychol Rev. 2018. Epub ahead of print.
    1. Wang YC, Kapellusch J, Garg A. Important factors influencing the return to work after stroke. Work. 2014;47(4):553–559.
    1. Cooper CL, Phillips LH, Johnston M, Whyte M, MacLeod MJ. The role of emotion regulation on social participation following stroke. Br J Clin Psychol. 2015;54(2):181–199. doi: 10.1111/bjc.12068.
    1. Haun J, Rittmann M, Sberna M. The continuum of connectedness and social isolation. J Aging Stud. 2008;22:54–69. doi: 10.1016/j.jaging.2007.03.001.
    1. Stroke Alliance for Europe . The burden of stroke in Europe. 2017.
    1. Pindus DM, et al. Stroke survivors’ and informal caregivers’ experiences of primary care and community healthcare services - a systematic review and meta-ethnography. PLoS One. 2018;13(2):e0192533. doi: 10.1371/journal.pone.0192533.
    1. Nikolaus T, Specht-Leible N, Bach M, Oster P, Schlierf G. Social aspects in diagnosis and therapy of very elderly patients. Initial experiences with a newly developed questionnaire within the scope of geriatric assessment (Article in German) Z Gerontol. 1994;27(4):240–245.
    1. McKevitt C, Fudge N, Redfern J, Sheldenkar A, Crichton S, Rudd AR, Forster A, Young J, Nazareth I, Silver LE, Rothwell PM, Wolfe CDA. Self-reported long-term needs after stroke. Stroke. 2011;42:1398–1403. doi: 10.1161/STROKEAHA.110.598839.
    1. Greiner W, Claes C, JJV B. Validating the EQ-5D with time trade off for the German population. Eur J Health Econ, pp. 2005;6(2):124–130. doi: 10.1007/s10198-004-0264-z.
    1. Graessel E, Berth H, Lichte T, Grau H. Subjective caregiver burden: validity of the 10-item short version of the Burden Scale for Family Caregivers BSFC-s. BMX Geriatr. 2014;14:23. doi: 10.1186/1471-2318-14-23.
    1. Banks JL, Marotta CA. Outcomes validity and reliability of the modified Rankin scale: implications for stroke clinical trials: a literature review and synthesis. Stroke. 2007;38(3):1091–1096. doi: 10.1161/01.STR.0000258355.23810.c6.
    1. Duncan PW, Wallace D, Lai SM, Johnson D, Embretson S, Laster LJ. The stroke impact scale version 2.0. Evaluation of reliability, validity, and sensitivity to change. Stroke. 1999;30(10):2131–2140. doi: 10.1161/01.STR.30.10.2131.
    1. .
    1. Rowe JM, et al. The role of social workers in addressing nonmedical needsin primary health care. Soc Work Health Care. 2017;56(6):435–449. doi: 10.1080/00981389.2017.1318799.
    1. Padberg I, et al. Social work after stroke: identifying demand for support by recording stroke patients’ and carers’ needs in different phases after stroke. BMC Neurol. 2016;16:111. doi: 10.1186/s12883-016-0626-z.
    1. Ferro JM. Hyperacute cognitive stroke syndromes. J Neurol. 2001;248(10):841–849. doi: 10.1007/s004150170067.
    1. Luther A, Lincoln NB, Grant F. Reliability of stroke patients' reports on rehabilitation services received. Clin Rehabil. 1998;12(3):238–244. doi: 10.1191/026921598671668617.
    1. Seymour LM, Wolf TJ. Participation Changes in Sexual Functioning after Mild Stroke. OTJR (Thorofare N J) 2014;34(2):72–80.
    1. Tamam Y, et al. Post-stroke sexual functioning in first stroke patients. Eur J Neurol. 2008;15(7):660–666. doi: 10.1111/j.1468-1331.2008.02184.x.
    1. McGilton KS, Vellani S, et al. Identifying and understanding the health and social care needs of older adults with multiple chronic conditions and their caregivers: a scoping review. BMC Geriatrics. 2018;18:231. doi: 10.1186/s12877-018-0925-x.
    1. Linton Kristen F., Ing Marissa M., Vento Megan A., Nakagawa Kazuma. From Discharge Planner to “Concierge”: Recommendations for Hospital Social Work by Clients with Intracerebral Hemorrhage. Social Work in Public Health. 2015;30(6):486–495. doi: 10.1080/19371918.2015.1058730.
    1. Duncan PW, et al. The comprehensive post-acute stroke services (COMPASS) study: design and methods for a cluster randomized pragmatic trial. BMC Neurology. 2017;17:133.
    1. Han B and Haley WE. Family caregiving for patients with stroke. 1999, Stroke, pp. 14:1478–1485.
    1. Evans RL, Bishop DS, Haselkorn JK. Factors predicting satisfactory home care after stroke. Arch Phys Med Rehabil, pp. 1991;14:144–147.
    1. Jill C, et al. Randomized clinical trial of the timing it right stroke family support program: research protocol. BMC Health Serv Res, p. 2014;14:18.
    1. Grotkamp S, et al. Personal contextual factors of the ICF draft from the Working Group “ICF” of Specialty Group II of the Geman Society for Social Medicine and Prevention. Gesundheitswesen. 2010;72(12):908–916. doi: 10.1055/s-0030-1268459.
    1. Murray J, et al. Developing a primary care-based stroke service: a review of the qualitative literature. Br J Gen Pract. 2003;53(487):137–142.
    1. Chun HY, et al. Anxiety After Stroke: The Importance of Subtyping. Stroke. 2018;49(3):556–564. doi: 10.1161/STROKEAHA.117.020078.
    1. White CL, Barrientos R, Dunn K. Dimensions of uncertainty after stroke: perspectives of the stroke survivor and family caregiver. J Neurosci Nurs. 2014;46(4):233–240. doi: 10.1097/JNN.0000000000000066.
    1. Hackett Maree L., Anderson Craig S. Predictors of Depression after Stroke. Stroke. 2005;36(10):2296–2301. doi: 10.1161/01.STR.0000183622.75135.a4.
    1. Schlote A, et al. Knowledge of support and aid after first stroke. Rehabilitation (Stuttg) 2008;47(3):136–144. doi: 10.1055/s-2007-993169.
    1. Camak DJ. Addressing the burden of stroke caregivers: a literature review. J Clin Nurs. 2015;24(17–18):2376–2382. doi: 10.1111/jocn.12884.
    1. Hempler I, et al. Post-stroke care after medical rehabilitation in Germany: a systematic literature review of the current provision of stroke patients. BMC Health Serv Res. 2018;18:468. doi: 10.1186/s12913-018-3235-2.
    1. Barlinn J, et al. Organized Post-Stroke Care through Case Management on the Basis of a Standardized Treatment Pathway : Results of a Single-Centre Pilot Study. 2016, Nervenarzt, pp. 87(8):860–869.
    1. Reeves M, et al. Improving transitions in acute stroke patients discharged to home: the Michigan stroke transitions trial (MISTT) protocol. BMC Neurol. 2017;17:115. doi: 10.1186/s12883-017-0895-1.
    1. Murray J, et al. Developing a primary care-based stroke model: the prevalence of longer-term problems experienced by patients and carers. Br J Gen Pract. 2003;53(495):803–807.
    1. Ch'ng AM, French D, McLean N. Coping with the challenges of recovery from stroke: long term perspectives of stroke support group members. J Health Psychol. 2008;13(8):1136–1146. doi: 10.1177/1359105308095967.
    1. Barker-Collo SL. Depression and anxiety 3 months post stroke: prevalence and correlates. Arch Clin Neuropsychol. 2007;22(4):519–531. doi: 10.1016/j.acn.2007.03.002.
    1. Baumann M, Le Bihan E, Chau K, Chau N. Associations between quality of life and socioeconomic factors, functional impairments and dissatisfaction with received information and home-care services among survivors living at home two years after stroke onset. BMC Neurol. 2014;14:92. doi: 10.1186/1471-2377-14-92.
    1. Ayerbe L, Ayis S, Rudd AG, Heuschmann PU, Wolfe CD. Natural history, predictors, and associations of depression 5 years after stroke: the South London Stroke Register. Stroke. 2011;42(7):1907–1911. doi: 10.1161/STROKEAHA.110.605808.

Source: PubMed

Sponsors and Collaborators

Medical Conditions

Drug Interventions

3
Subscribe