RELACIONES ENTRE DESARROLLOPOBREZAMEDIO AMBIENTE

A strength of the study was that the participants varied in age and gender and had many years of experience living with a person with a variety of stroke consequences. However, the young spouses of stroke survivors were less present in the focus groups. Furthermore, spouses with a non-Dutch background were lacking in the focus groups. A limitation of the focus group methodology might be that some participants vocalized disagreement less due to the social context of the discussion. The separate data analysis by the first author and four research assistants and the debriefing of procedure and content with the second author and whole research team enhanced credibility and confirmability.27, 28 Preliminary findings have been presented and confirmed during a meeting with a selected group of spouses and professionals in stroke rehabilitation. One remark was that several spouses were divorced from their partner post-stroke and that this group was not present.

Conclusions

Stroke affects stroke survivors and their spouses. Stroke survivors’ spouses reported changing roles, experienced feelings of burden, sadness, loneliness and guilt. They expressed how they quickly effaced themselves to support their partners post-stroke. They also expressed a need for time to themselves to self-manage. Development of stroke self-management programs in which stroke survivors and their spouses are involved from the beginning are needed and should continue at home. The focus should be not only on enhancing the skills of spouses in caregiving or providing additional therapy, but also on support and coaching stroke survivors’ spouses in their own emotional and role management. Moreover, the value of peer support in self-management programs should be taken into account by professionals.

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Acknowledgements

We are grateful to the spouses of stroke survivors who were willing to share their stories with us. Furthermore, we thank Vienna Brand (VB), Zoë Fleuren (ZF), Leonie Kanning (LK) and Maaike Kroon (MK), who assisted in the organisation of the interviews and analysis of the data.

References

1. Krishnamurthi RV, Feigin VL, Forouzanfar MH, Mensah GA, Connor M, Bennett DA, Moran AE, Sacco RL, Anderson LM, Truelsen T, et al. Global and regional burden of first-ever ischaemic and haemorrhagic stroke during 1990-2010: Findings from the global burden of disease study 2010. Lancet Glob Health 2013 Nov;1(5):e259-81.

2. Satink T, Cup EH, Ilott I, Prins J, de Swart BJ, Nijhuis-van der Sanden MW. Patients’ views on the impact of stroke on their roles and self: A thematic synthesis of qualitative studies. Arch Phys Med Rehabil 2013 Jun;94(6):1171-83. 3. Satink T, Cup EH, de Swart BJ, Nijhuis-van der Sanden MW. How is self-management perceived by community

living people after a stroke? A focus group study. Disabil Rehabil 2015;37(3):223-30.

4. Quinn K, Murray C, Malone C. Spousal experiences of coping with and adapting to caregiving for a partner who has a stroke: A meta-synthesis of qualitative research. Disabil Rehabil 2014;36(3):185-98.

5. Visser-Meily A, Post M, Gorter JW, Berlekom SB, Van Den Bos T, Lindeman E. Rehabilitation of stroke patients needs a family-centred approach. Disabil Rehabil 2006 Dec 30;28(24):1557-61.

6. Pringle J, Hendry C, McLafferty E. A review of the early discharge experiences of stroke survivors and their carers. J Clin Nurs 2008 Sep;17(18):2384-97.

7. O’Connell B, Baker L. Managing as carers of stroke survivors: Strategies from the field. Int J Nurs Pract 2004 Jun;10(3):121-6.

8. Jones F. Strategies to enhance chronic disease self-management: How can we apply this to stroke? Disabil Rehabil 2006 Jul 15-30;28(13-14):841-7.

9. Jones F, Riazi A, Norris M. Self-management after stroke: Time for some more questions? Disabil Rehabil 2013 Feb;35(3):257-64.

10. Wilkinson A, Whitehead L. Evolution of the concept of self-care and implications for nurses: A literature review. Int J Nurs Stud 2009 Aug;46(8):1143-7.

11. Corbin J, Strauss A. Unending work and care: Managing chronic illness at home. San Fransisco: Jossey-Bass; 1988.

12. Jedeloo S, Leenders J. Zelfmanagement. Dan Haag: Book Lemma Uitgevers; 2010.

13. Lorig K, Holman H, Sobel D, Laurent DD, González V, Minor M. Living a healthy life with chronic conditions. 3rd ed. ed. Boulders: James Bull; 2006.

14. Schulman-Green D, Jaser S, Martin F, Alonzo A, Grey M, McCorkle R, Redeker NS, Reynolds N, Whittemore R. Processes of self-management in chronic illness. J Nurs Scholarsh 2012 Jun;44(2):136-44.

15. Jedeloo S, van Weele E. Zelfmanagement. 2nd ed. Den Haag: Boom Lemma uitgevers; 2015.

16. Satink T, Cup EH, de Swart BJ, Nijhuis-van der Sanden MW. Self-management: Challenges for allied healthcare professionals in stroke rehabilitation - a focus group study. Disabil Rehabil 2015 Oct 28;37(19):1745-52. 17. Craig P, Dieppe P, Macintyre S, Michie S, Nazareth I, Petticrew M, Medical Research Council Guidance.

Developing and evaluating complex interventions: The new medical research council guidance. BMJ 2008 Sep 29;337:a1655.

18. Visser-Meily A, Post M, van de Port I, Maas C, Forstberg-Warleby G, Lindeman E. Psychosocial functioning of spouses of patients with stroke from initial inpatient rehabilitation to 3 years poststroke: Course and relations with coping strategies. Stroke 2009 Apr;40(4):1399-404.

19. Greenwood N, Mackenzie A, Cloud GC, Wilson N. Informal primary carers of stroke survivors living at home-challenges, satisfactions and coping: A systematic review of qualitative studies. Disabil Rehabil 2009;31(5):337-51.

20. Depoy E, Gitlin LN. Introduction to research - understanding and applying multiple strategies. 4th ed. ed. St Louis: Elsevier; 2013.

21. Freeman T. ‘Best practice’ in focus group research: Making sense of different views. J Adv Nurs 2006 Dec;56(5):491-7.

22. Peters M. Does constructivist epistemology have a place in nurse education? J Nurs Educ 2000 Apr;39(4):166-72. 23. Evers J. Het ontwerpen van een focusgroep. In: J. Evers, editor. Kwalitatief interviewen: Kunst en kunde. Den

Haag: Lemma; 2007.

83

The Perspectives of Spouses of Stroke Survivors on Self-Management

4

25. World Medical Association. World medical association declaration of helsinki: Ethical principles for medical research involving human subjects. JAMA 2013 Nov 27;310(20):2191-4.

26. Saldana J. The coding manual for qualitative researchers. Los Angeles: Sage; 2013.

27. Devers KJ. How will we know “good” qualitative research when we see it? beginning the dialogue in health services research. Health Serv Res 1999 Dec;34(5 Pt 2):1153-88.

28. Graneheim UH, Lundman B. Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today 2004 Feb;24(2):105-12.

29. Cecil R, Parahoo K, Thompson K, McCaughan E, Power M, Campbell Y. ‘The hard work starts now’: A glimpse into the lives of carers of community-dwelling stroke survivors. J Clin Nurs 2011 Jun;20(11-12):1723-30. 30. Brereton L, Nolan M. ‘You do know he’s had a stroke, don’t you?’ preparation for family care-giving--the

neglected dimension. J Clin Nurs 2000 Jul;9(4):498-506.

31. O’Connell B, Baker L, Prosser A. The educational needs of caregivers of stroke survivors in acute and community settings. J Neurosci Nurs 2003 Feb;35(1):21-8.

32. Backstrom B, Sundin K. The experience of being a middle-aged close relative of a person who has suffered a stroke-six months after discharge from a rehabilitation clinic. Scand J Caring Sci 2010 Mar;24(1):116-24. 33. Fens M, Beusmans G, Limburg M, van Hoef L, van Haastregt J, Metsemakers J, van Heugten C. A process

evaluation of a stroke-specific follow-up care model for stroke patients and caregivers; a longitudinal study. BMC Nurs 2015 Jan 16;14(1):3,014-0052-8. eCollection 2015.

34. Graff MJ, Vernooij-Dassen MJ, Thijssen M, Dekker J, Hoefnagels WH, Olderikkert MG. Effects of community occupational therapy on quality of life, mood, and health status in dementia patients and their caregivers: A randomized controlled trial. J Gerontol A Biol Sci Med Sci 2007 Sep;62(9):1002-9.

35. Cameron JI, Gignac MA. “Timing it right”: A conceptual framework for addressing the support needs of family caregivers to stroke survivors from the hospital to the home. Patient Educ Couns 2008 Mar;70(3):305-14. 36. Care 4 Stroke program: Caregiver mediated exercises with e-health support for early supported discharge

after stroke; [cited 2015 9/9]. Available from: http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=4300. 37. Adriaansen JJ, van Leeuwen CM, Visser-Meily JM, van den Bos GA, Post MW. Course of social support and

relationships between social support and life satisfaction in spouses of patients with stroke in the chronic phase. Patient Educ Couns 2011 Nov;85(2):e48-52.

38. Morris R, Morris P. Participants’ experiences of hospital-based peer support groups for stroke patients and carers. Disabil Rehabil 2012;34(4):347-54.

39. Kessler D, Egan M, Kubina LA. Peer support for stroke survivors: A case study. BMC Health Serv Res 2014 Jun 16;14:256,6963-14-256.

Self-Management: Challenges for Allied