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Two-level multi-methodological evaluation of a new complex primary support programme for stroke care-givers in Germany

Published online by Cambridge University Press:  10 June 2020

Theresia Krieger Open the ORCID record for Theresia Krieger [Opens in a new window] ,
Frans Feron  and
Elisabeth Dorant
Theresia Krieger*
Affiliation:
Department of Social Medicine, Faculty of Health, Medicine and Life Sciences, Maastricht, The Netherlands Institute for Health Research and Social Psychiatry, Catholic University of Applied Sciences North Rhine-Westphalia, Aachen, Germany
Frans Feron
Affiliation:
Institute for Health Research and Social Psychiatry, Catholic University of Applied Sciences North Rhine-Westphalia, Aachen, Germany
Elisabeth Dorant
Affiliation:
Institute for Health Research and Social Psychiatry, Catholic University of Applied Sciences North Rhine-Westphalia, Aachen, Germany
*
*Corresponding author. Email: theresia.krieger@maastrichtuniversity.nl
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Abstract

Family care-givers are the backbone of the long-term support system for care receivers at home. Care for stroke survivors after rehabilitation primarily rests on the shoulders of family members, often of older age themselves. We report the outcomes of a new complex support programme, the Care-givers’ Guide, on both individual and system levels. Psycho-social support and personalised information were the main ingredients of this intervention. A two-level multi-methodological approach was needed, with two concurrent interconnected studies. Family care-givers reflected on outcomes at an individual level in a quant-QUAL study with a pre–post quantitative questionnaire and a post-intervention qualitative semi-structured interview. Practitioners participated in a QUAL-QUAL study ex post interview, reflecting on the outcomes on the care-givers and on their own stroke care system. Individual family care-givers showed an increase in health literacy and level of psycho-social health. Qualitative analysis revealed improvement in knowledge, capability to act and individual empowerment; and stabilisation of sense of certainty, life balance and emotional wellbeing. Practitioners observed an optimisation of the stroke support system by improving professionals’ daily routine, augmenting the institutional support offer, securing the quality of patient care and increasing inter-institutional co-operation attempts. Positive outcomes of the support programme were observed on both evaluation levels: family care-givers showed improved health literacy and psycho-social health, whereas the professionals noticed an optimisation of the support system.

Keywords

family care-givercomplex interventionstrokemixed methodsevaluationindividual and system level
Type
Article
Information
Ageing & Society , Volume 42 , Issue 1 , January 2022 , pp. 1 - 31
Copyright
Copyright © The Author(s), 2020. Published by Cambridge University Press

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References

Adelman, R, Tmanova, L, Delegado, D, Dion, S and Lachs, M (2014) Caregiver burden. A clinical review. Journal of the American Medical Association 311, 1052–1059.10.1001/jama.2014.304CrossRefGoogle ScholarPubMed
Aguirrezabal, A, Duarte, E, Rueda, N, Cervantes, C, Marco, E and Escalada, F (2013) Effects of information and training provision in satisfaction of patients and carers in stroke rehabilitation. NeuroRehabilitation 33, 639–647.10.3233/NRE-130989CrossRefGoogle ScholarPubMed
Allgemeine Ortkrankenkasse [Govermental Health Insurance] (2019) Modellprojekt ‘Familiale Pflege’. Available at https://www.aok.de/pk/rh/inhalt/modellprojekt-familiale-pflege-seit-zehn-jahren-pflege-training-fuer-angehoerige/.Google Scholar
Bakas, T, Clark, P, Kelly-Hayes, M, King, R, Lutz, B and Miller, E (2014) Evidence for stroke family caregiver and dyad interventions: a statement for healthcare professionals from the American Heart Association and American Stroke Association. Stroke 45, 2836–2852.10.1161/STR.0000000000000033CrossRefGoogle ScholarPubMed
Bakas, T, McCarthy, M and Miller, ET (2017) An update on the state of the evidence for stroke family caregiver and dyad interventions. Stroke 48, e122–e125.10.1161/STROKEAHA.117.016052CrossRefGoogle ScholarPubMed
Beauchamp, TL and Childress, JF (1989) Principles of Biomedical Ethics, 3rd Edn. New York, NY: Oxford University Press.Google Scholar
Bonita, R, Mendis, S, Truelsen, T, Bogousslavsky, J, Toole, J and Yatsu, F (2004) The global stroke initiative. Lancet Neurology 3, 391–393.10.1016/S1474-4422(04)00800-2CrossRefGoogle ScholarPubMed
Bundesarbeitsgemeinschaft Rehabilitation [German Working Group for Rehabilitation] (2014) Empfehlungen zur Phase E der neurologischen Rehabilitation. Available at http://www.bar-frankfurt.de/fileadmin/dateiliste/1-News-Seiten/5-BAR_eV/BAR-Symposium_Neuro/downloads/Hintergrund_neurologisches_Phase.Google Scholar
Camak, DJ (2015) Addressing the burden of stroke caregivers: a literature review. Journal of Clinical Nursing 24, 2376–2382.10.1111/jocn.12884CrossRefGoogle ScholarPubMed
Cameron, J, Tsoi, C and Marsell, A (2008) Optimizing stroke systems of care by enhancing transitions across care environments. Stroke 39, 2637–2643.10.1161/STROKEAHA.107.501064CrossRefGoogle ScholarPubMed
Campbell, N, Murray, E, Darbyshire, J, Emery, J, Farmer, A, Griffiths, F, Guthrie, B, Lester, H, Wilson, P and Kinmonth, A (2007) Designing and evaluating complex interventions to improve health care. British Medical Journal 334, 455–459.10.1136/bmj.39108.379965.BECrossRefGoogle ScholarPubMed
Candy, B, Jones, L, Drake, R, Leurent, B and King, M (2011) Interventions for supporting informal caregivers of patients in the terminal phase of a disease. Cochrane Database of Systematic Reviews 6, CD007617.Google Scholar
Carlson, E, Ehnfors, M, Eldh, AC and Ehrenberg, A (2012) Accuracy and continuity in discharge information for patients with eating difficulties after stroke. Journal of Clinical Nursing 21, 21–31.10.1111/j.1365-2702.2010.03648.xCrossRefGoogle Scholar
Chen, L, Xiao, L and Bellis, A (2015) First time stroke survivors and caregivers’ perception of being engaged in rehabilitation. Journal of Advanced Nursing 72, 71–84.Google Scholar
Craig, P, Dieppe, P, Macintyre, S, Michie, S, Nazareth, I and Petticrew, M (2008) Developing and evaluating complex interventions: the new Medical Research Council guidance. British Medical Journal 337, a1655.10.1136/bmj.a1655CrossRefGoogle ScholarPubMed
Creswell, J, Fetters, MD and Ivankova, NV (2004) Designing a mixed methods study in primary care. Annals of Family Medicine 4, 7–12.10.1370/afm.104CrossRefGoogle Scholar
Datta, J and Petticrew, M (2013) Challenges to evaluating complex interventions: a content analysis of published papers. BioMed Central Public Health 13, 568.10.1186/1471-2458-13-568CrossRefGoogle ScholarPubMed
Egan, M, Anderson, S and McTaggart, J (2010) Community navigation for stroke survivors and their care partners: description and evaluation. Top Stroke Rehabilitation 17, 183–190.10.1310/tsr1703-183CrossRefGoogle ScholarPubMed
Elo, S and Kyngäs, H (2008) The qualitative content analysis process. Journal of Advanced Nursing 62, 1007–1115.10.1111/j.1365-2648.2007.04569.xCrossRefGoogle ScholarPubMed
Family Caregiver Alliance (2019) Caregiving Statistics: Demographics. Available at https://www.caregiver.org/caregiver-statistics-demographics.Google Scholar
Forster, A, Dickerson, J, Young, J, Patel, A, Kalra, L, Nixon, J, Smithard, D, Knapp, M, Holloway, I, Anwar, S and Farrin, A (2013) A structured training programme for caregivers of inpatients after stroke (TRACS): a cluster randomized controlled trial and cost-effectiveness analysis. TRACS Trial Collaboration. Lancet 382, 2069–2076.10.1016/S0140-6736(13)61603-7CrossRefGoogle Scholar
Freebody, P and Luke, A (1990) Literacies programs: debates and demands in cultural context. Prospect 5, 7–16.Google Scholar
Gesetzliche Krankenversicherung (GKV) (2011) Telefongestützte Intervention für Pflegende Angehörige von Schlaganfall-Betroffenen. Available at https://www.gkv-spitzenverband.de/media/dokumente/presse/publikationen/schriftenreihe/GKV-Schriftenreihe_Pflege_Band_8_18968.pdf.Google Scholar
Graneheim, U, Lindgren, BM and Lindman, B (2017) Methodological challenges in qualitative content analyses: a discussion paper. Nurse Education Today 56, 29–34.10.1016/j.nedt.2017.06.002CrossRefGoogle Scholar
Grant, J, Hunt, C and Steadman, L (2014) Common caregiver issues and nursing interventions after a stroke. Stroke 45, e151–e153.10.1161/STROKEAHA.114.005094CrossRefGoogle ScholarPubMed
Greenhalgh, T, Jackson, C, Shaw, S and Janamian, T (2016) Achieving research impact through co-creation in community-based health services: literature review and case study. The Milbank Quarterly 94, 392–429.10.1111/1468-0009.12197CrossRefGoogle ScholarPubMed
Gröning, K, Lienker, H and Sander, B (2018) Neue Herausforderungen im Übergang vom Krankenhaus in die familiale Pflege: Programmbeschreibung [New Challenges in the Transfer from Hospital to the Informal Care System: Programme Description]. Available at https://www.uni-bielefeld.de/erziehungswissenschaft/ag7/familiale_pflege/materialien/Programmbeschreibung-2018.pdf.Google Scholar
Guillemin, M and Gillam, L (2004) Ethics, reflexivity, and ‘ethically important moments’ in research. Qualitative Inquiry 10, 261–280.10.1177/1077800403262360CrossRefGoogle Scholar
Gunderson, J, Crepeau-Hobson, F and Drennen, C (2012) Research to practice: a disaster behavioral health framework. Disaster Prevention and Management 21, 572–583.10.1108/09653561211278707CrossRefGoogle Scholar
Han, B and Haley, WE (1999) Family caregiving for patients with stroke: review and analysis. Stroke 30, 1478–1485.10.1161/01.STR.30.7.1478CrossRefGoogle ScholarPubMed
Hsieh, H and Shannon, S (2005) Three approaches to qualitative content analysis. Qualitative Health Research 15, 1277–1288.10.1177/1049732305276687CrossRefGoogle ScholarPubMed
Ivankova, NV, Creswell, JW and Stick, SL (2006) Using mixed-methods sequential explanatory design: from theory to practice. Field Methods 18, 3–20.10.1177/1525822X05282260CrossRefGoogle Scholar
Johnston, SC, Mendis, S and Mathers, C (2009) Global variation in stroke burden and mortality: estimates from monitoring, surveillance, and modelling. Lancet Neurology 8, 345–354.10.1016/S1474-4422(09)70023-7CrossRefGoogle ScholarPubMed
Jungbauer, J, Floren, M and Krieger, T (2014) Der Angehörigenlotse: Ein innovatives Modellprojekt für Angehörige von Schlaganfallpatienten. FORUM sozialarbeit + gesundheit 3, 22–24.Google Scholar
Kelly-Hayes, M (2010) Influence of age and health behaviours on stroke risk: lessons from longitudinal studies. Journal of the American Geriatrics Society 58, S325–S328.10.1111/j.1532-5415.2010.02915.xCrossRefGoogle ScholarPubMed
King, RB, Hartke, T, Houle, T, Lee, J, Herring, G, Alexander-Perterson, BS and Raad, J (2012) A problem-solving early intervention for stroke caregivers: one year follow-up. Rehabilitation Nursing 37, 231–241.10.1002/rnj.039CrossRefGoogle ScholarPubMed
Krieger, T, Feron, F and Dorant, E (2017) Developing a complex intervention programme for informal caregivers of stroke survivors: The Caregivers’ Guide. Scandinavian Journal of Caring Sciences 31, 146–156.10.1111/scs.12344CrossRefGoogle ScholarPubMed
Krieger, T, Floren, M, Feron, F and Dorant, E (2019) Optimising the concept of a complex stroke caregiver support programme via participatory action research. Educational Action Research. Available online doi:10.1080/09650792.2019.1699131.Google Scholar
Krieger, T, Feron, F, Bouman, N and Dorant, E (2020) Developing implementation management instruments in a complex intervention for stroke caregivers based on combined stakeholder and risk analyses. Scandinavian Journal of Caring Sciences 34, 215–229.10.1111/scs.12723CrossRefGoogle Scholar
Krippendorff, K (2013) Content Analysis. An Introduction to its Methodology. London: Sage.Google Scholar
Küttel, C, Schäfer-Keller, P, Brunner, C, Conca, A, Schütz, P and Frei, IA (2015) Daily routine of informal caregivers-needs and concerns with regard to the discharge of their elderly family members from the hospital setting – a qualitative study. Pflege 28, 111–121.10.1024/1012-5302/a000413CrossRefGoogle ScholarPubMed
Larson, J, Franzén-Dahlin, A, Billing, E, Arbin, M, Murray, V and Wredling, R (2005) The impact of a nurse-led support and education programme for spouses of stroke patients: a randomized controlled trial. Journal of Clinical Nursing 14, 995–1003.10.1111/j.1365-2702.2005.01206.xCrossRefGoogle ScholarPubMed
Legg, LA, Quinn, TJ, Mahmood, F, Weir, CJ, Tierney, J, Stott, DJ, Smith, LN and Langhorne, P (2011) Non-pharmacological interventions for caregivers of stroke survivors. Cochrane Database of Systematic Reviews 5, CD008179.Google Scholar
Li, X, Xia, X, Wang, P, Zhang, S, Liu, M and Wang, L (2017) Needs and rights awareness of stroke survivors and caregivers: a cross-sectional, single-centre questionnaire survey. BMJ Open 7, e013210.10.1136/bmjopen-2016-013210CrossRefGoogle ScholarPubMed
Lutz, B and Young, M (2010) Rethinking intervention strategies in stroke family caregiving. Rehabilitation Nursing 35, 152–160.10.1002/j.2048-7940.2010.tb00041.xCrossRefGoogle ScholarPubMed
Manteufel, L (2012) Schlaganfall-Lotsen entlasten Ärzte. Deutsches Ärzteblatt 111, 17.Google Scholar
Morse, J (2015) Critical Analysis of Strategies for Determining Rigor in Qualitative Inquiry. Qualitative Health Research 25, 1212–1222.10.1177/1049732315588501CrossRefGoogle ScholarPubMed
Morse, JM and Cheek, J (2014) Making room for qualitatively-driven mixed-method research. Qualitative Health Research 24, 3–5.10.1177/1049732313513656CrossRefGoogle ScholarPubMed
Murray, J, Young, J, Forster, A and Ashworth, R (2003) Developing a primary Gaze-based stroke model: the prevalence of longer-term problems experienced by patients and carers. British Journal of General Practice 53, 803–807.Google Scholar
Ng, GT (2009) Support for family caregivers: what do service providers say about accessibility, availability and affordability of services. Health and Social Care in the Community 17, 590–598.10.1111/j.1365-2524.2009.00858.xCrossRefGoogle ScholarPubMed
Ostwald, SK, Godwin, KM, Cron, SG, Kelley, CP, Hersch, G and Davis, S (2013) Home-based psychoeducational and mailed information programs for stroke–caregiving dyads post-discharge: a randomized trial. Disability and Rehabilitation 36, 55–62.10.3109/09638288.2013.777806CrossRefGoogle ScholarPubMed
Paasche-Orlow, MK and Wolf, MS (2007) The causal pathways linking health literacy to health outcomes. American Journal of Health Behavior 31, S19–S26.10.5993/AJHB.31.s1.4CrossRefGoogle ScholarPubMed
Palmer, S, Glass, TA, Palmer, JB, Loo, S and Wegener, ST (2004) Crisis intervention with individuals and their families following stroke: a model for psychosocial service during inpatient rehabilitation. Rehabilitation Psychology 49, 338–343.10.1037/0090-5550.49.4.338CrossRefGoogle Scholar
Patton, MQ (2001) Qualitative Evaluation and Research Methods, 2nd Edn. Thousand Oaks, CA: Sage.Google Scholar
Perry, L and Middleton, S (2011) An investigation of family carers’ needs following stroke survivors’ discharge from acute hospital care in Australia. Disability and Rehabilitation 33, 1890–1900.10.3109/09638288.2011.553702CrossRefGoogle ScholarPubMed
Pindus, D, Mullis, R, Lim, L, Wellwood, I, Rundell, V, Abd Aziz, N and Mant, J (2018) Stroke caregivers’ and informal caregivers’ experiences of primary care and community health care services – a systematic review and meta-ethnography. PLOS ONE 13, e0192533.10.1371/journal.pone.0192533CrossRefGoogle ScholarPubMed
Redfern, J, McKevitt, C, Wolfe, S and Charles, DA (2006) Development of complex interventions in stroke care: a systematic review. Stroke 37, 2410–2419.10.1161/01.STR.0000237097.00342.a9CrossRefGoogle ScholarPubMed
Ris, I, Schnepp, W and Mahrer Imhof, R (2019) An integrative review on family caregivers’ involvement in care of home-dwelling elderly. Health and Social Care in the Community 27, e95–e111.10.1111/hsc.12663CrossRefGoogle ScholarPubMed
Sanders, K, Schnepel, L, Smotherman, C, Livingood, W, Dodani, S, Antonios, N, Lukens-Bull, K, Balls-Berry, J, Johnson, Y, Miller, T, Hodges, W, Falk, D, Wood, D and Silliman, S (2014) Assessing the impact of health literacy on education retention of stroke patients. Preventing Chronic Disease 11, 130259.10.5888/pcd11.130259CrossRefGoogle ScholarPubMed
Schreiner, M (2012) Qualitative Content Analyses in Practice. London: Sage.Google Scholar
Schuler, M and Oster, P (2004) Versorgung von Patienten mit und nach akutem Schlaganfall. Gesundheit, Gesellschaft, Wissenschaft 3, 153–138.Google Scholar
Schure, LM, van den Heuvel, ET, Stewart, RE, Sanderman, R, de Witte, LP and Meyboom-de Jong, B (2006) Beyond stroke: description and evaluation of an effective intervention to support family caregivers of stroke patients. Patient Education & Counseling 62, 46–55.10.1016/j.pec.2005.05.015CrossRefGoogle ScholarPubMed
Smith, LN, Lawrence, M, Kerr, SM, Langhorne, P and Lees, KR (2004) Informal carers’ experience of caring for stroke survivors. Journal of Advanced Nursing 46, 235–244.10.1111/j.1365-2648.2004.02983.xCrossRefGoogle ScholarPubMed
Smith, GC, Egbert, N, Dellman-Jenkins, M, Nanna, K and Palmieri, PA (2012) Reducing depression in stroke survivors and their informal caregivers: a randomized clinical trial of a web-based intervention. Rehabilitation Psychology 57, 196–206.10.1037/a0029587CrossRefGoogle ScholarPubMed
Springett, J and Wallerstein, N (2008) Issues in participatory evaluation. In Minkler, M and Wallerstein, N (eds), Community Based Participatory Research for Health. New York, NY: Jossey-Bass, pp. 263–286.Google Scholar
Thrift, AG, Cadilhac, DA, Thayabaranathan, T, Howard, G, Howard, VJ, Rothwell, PM and Donnan, GA (2014) Global stroke statistics. International Journal of Stroke 9, 6–18.10.1111/ijs.12245CrossRefGoogle ScholarPubMed
Tong, A, Sainsbury, P and 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, 349–357.10.1093/intqhc/mzm042CrossRefGoogle ScholarPubMed
Tooth, L, McKenna, K, Barnett, A, Prescott, C and Murphy, S (2005) Caregiver burden, time spent caring and health status in the first 12 months following stroke. Brain Injury 19, 963–974.10.1080/02699050500110785CrossRefGoogle ScholarPubMed
Visser-Meily, A, van Heutgen, C, Post, M, Schepers, V and Lindeman, E (2005) Intervention studies for caregivers of stroke survivors: a critical review. Patient Education and Counselling 56, 257–267.10.1016/j.pec.2004.02.013CrossRefGoogle ScholarPubMed
Wilz, G and Barskova, T (2007) Evaluation of a cognitive behavioral group intervention program for spouses of stroke patients. Behavioral Research & Therapy 45, 2508–2517.10.1016/j.brat.2007.04.010CrossRefGoogle ScholarPubMed
Wilz, G and Böhm, B (2007) Interventions for caregivers of stroke patients: need and effectiveness. Psychotherapie, Psychosomatik, medizinische Psychologie 57, 12–18.Google ScholarPubMed
Yuen, E, Knight, T, Ricciardelli, L and Burney, S (2018) Health literacy of caregivers of adult care recipients: a systematic scoping review. Health and Social Care in the Community 26, e191–e206.10.1111/hsc.12368CrossRefGoogle ScholarPubMed
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