Hilary Thompson, Clinical Nurse Specialist Stroke, Armagh and Dungannon .

1. The psychosocial consequences of stroke and their impact on spousal relationships, from the perspective of the person with stroke. Hilary Thompson, Clinical Nurse Specialist Stroke, Armagh and Dungannon.

2. Study Aim; To explore the impact of stroke consequences on spousal relationships from the perspective of the person with stroke. • Qualitative approach. • In depth interviews. • Convenience sample of 18 stroke survivors who met inclusion criteria. • Over 18yrs. • Discharged from hospital with a diagnosis of stroke. • Living with a spouse. • Independent in ADL’s prior to stroke. • Stroke survivors with a cognitive impairment, who had moderate/severe communication difficulties/ dementia/ a terminal illness were excluded from the study.

3. Participants • Of the 18 stroke survivors who were contacted, 16 (89%) gave consent to participate • Age range 33-78 yrs • Median age was 64 yrs • Length of time lapse post stroke ranged from 2 months – 4 years • The gender of the sample group was well balanced with 9 males and 7 females

4. Data collection (28th February - 10th April 2007). • Face to face interviews, tailored accordingly to each participant’s ability to sustain concentration. Average length of interview was 25 minutes • Use of a semi-structured interview schedule formed the basis of the interview discussion • Life before stroke (work, role, relationship with spouse) • Life after stroke (physical, emotional, social effects of stroke and their impact on spousal relationship) • Coping strategies adopted by participants when adapting to life changes • Interviews were audio taped, number coded and later transcribed

5. Data analysis • Hand written notes immediately following interview documented from recall responses significant to overall aim of study • Qualitative content analysis (listen to taped interviews, interviews were transcribed, checked verbatim, corrected, read and re read transcriptions, coded to categorize emerging themes) • Following the 14th interview, identified themes were reasonably full with no new emerging themes arising • Analysis of further two transcriptions revealed no new themes, confirming data saturation

6. Findings:Themes were grouped into four broad categories • The dichotomies of pre and post stroke life • Sexuality, sexual functioning and desire • Perceived loss of control • Stroke - A life changing event

7. The dichotomies of pre and post stroke life. • Anger proneness and irritability • Frustration (dependence, over solicitous care and guilt) “ I suppose I have become dependent – which I never was before and I let them (family care givers) take over and think for me…They just do it for me, so I don’t have to – so I don’t bother”. (Wife, 66 yrs, 9 months post stroke).

8. Sexuality, sexual functioning and desire • Change of spousal role “ I rely on him (husband) a lot. I rely on him even to …he looks after the medication… and he does all of that. (Name of husband) and I have always been together but I feel as if it’s together in a different way now. I feel it’s together because he has to look after me…it’s not a husband and wife role anymore. It’s a carer and patient, and it’s not very pleasant and it’s not very fair. (Wife, 35 yrs, 4 years post stroke).

9. Sexuality… • Loss of interest in physical appearance • Loss of sexual desire and sexual pleasure “It (sexual desire) reduced completely, completely. No interest in this world whatsoever. I want her (wife) there now as a friend but not really as my wife. And it’s bound to annoy her when she sleeps in her own room and has her own thoughts. (Husband, 61 yrs, 10 months post stroke).

10. Sexual intercourse… • Reduced frequency “ He (husband) is quite happy with once a month, or whatever, you know and quite honestly, I encourage it for his sake. I take nothing out of it but he gets fulfillment and that’s the way it is.” (Wife, 66 yrs, 9 months post stroke).

11. Perceived lack of control • Loss of role, identity and sense of self “ I would always be a passenger now all the time – it’s really you’re not as much as a man as you were before.” • Socialising – fear of leaving the house, going out (shopping, meals) • Fatigue – consistently identified and described. This impacted greatly on being able to plan ahead.

12. Stroke – A Life Changing Event • Disparate to other physical illnesses • Course of recovery was often far removed from their expectations • Continuous daily struggle, requiring huge amounts of physical and mental effort to achieve some sense of normality and preserve a sense of ‘self’ post stroke

13. What this research adds… • Exclusively examined spousal relationship post stroke from the perspective of the person with stroke • Incidence of post stroke fatigue…underestimated in clinical practice • Changes in role, perceived altered physical appearance, fatigue and anger proneness following stroke create spousal strain, stress and discord. • Those changes in the pre and post stroke self, are inextricably linked with reduced sexuality and sexual functioning post stroke • Furthermore the extent to which this aspect of spousal relationships was affected was apparent insofar as sexual and intimate contact with their spouses had ceased for many stroke survivors.

14. Recommendations • Nurse education…focus on both the physical and psychosocial sequelae of stroke to … of holistic care to persons with stroke and their spouses • Health care professionals and service providers must take cognisance of and be sensitive to the profound impact of stroke on sexuality and sexual function • Statutory counselling services …people with stroke and their spouses, in both the acute and longer term trajectory of stroke recovery • Evidenced based guidance is needed to inform clinical nursing practice as how best the psychosocial needs of stroke survivors can be addressed

15. Publications • Thompson, H.S. Ryan, A. 2009. Understanding Patient Perspectives. The impact of stroke consequences on spousal relationships from the perspective of the person with stroke. Journal of Clinical Nursing. 18, 1803-1811. • Thompson, H.S. Ryan, A. 2008. A review of the psychosocial consequences of stroke and their impact on spousal relationships. British Journal of Neuroscience Nursing. 4, (4), 2-9.