Dr Assumpta Ryan and Hilary Thompson recently published findings from a study involving 16 married stroke survivors -- nine males and seven females -- aged between 33 and 78.
Dr Ryan from Ulster's Nursing Research Institute was co-author of the study alongside MSc student, Hilary Thompson, a Stroke Nurse Specialist within the Southern Health and Social Services Trust.
"All the participants perceived a stroke as a life-changing event. They faced a continuous daily struggle to achieve some sense of normality and that required huge amounts of physical and mental effort," said Dr. Ryan.
Key findings from the report, which were recently published in the Journal of Clinical Nursing, included:
- Sexual relationships changed. A 35-year-old female stroke survivor summed up the general feeling well. "It's not a husband and wife role anymore" she said. "It's a carer and a patient and it's not very pleasant and it's not fair."
- All but one of the respondents reported a reduction or total loss of sexual desire after their stroke. Some felt that this was down to medication and fear of another stroke. As one 61-year-old man told the researchers, "I want her there now as a friend but not really as my wife."
- Most of the females lost interest in their appearance, regardless of their age. "No interest in clothes, no interest in make-up, no interest in hair. Weeks go by that I don't even wash my hair," said one 57-year-old woman.
- All the respondents said they had changed since their stroke and irritability, anger, agitation and intolerance were frequently mentioned. "I'm normally easy going, but now the slightest little thing sets off the temper" said a 53-year-old man.
- A lot of the survivors said their outbursts reflected their frustration at not being able to perform routine daily activities, such as making a cup of tea. One 67-year-old man said that that his wife was a "reasonably healthy person" and asked "why should she be lumbered with me?."
- Over-protective spouses appeared to increase anger and feelings of frustration. One 78-year-old woman explained that her husband wouldn't give her time to do the things she could still do because "he's afraid of me falling".
- Survivors said they felt safe and comfortable at home but were reluctant to resume social activities with their spouse because of swallowing problems, anxiety and fatigue. "I would be asked enough times but won't go" said a 46-year-old man.
- Fatigue was a real issue for survivors and this was often associated with reduced independence and guilt. It made it difficult to plan ahead because they didn't know how they would feel from day to day.
"It is important to point out that stroke can happen at any age and many of the survivors who took part in our study were relatively young. Four respondents were aged between 33 and 43, two between 44 and 54, six between 55 and 65 and four between 66 and 78. The time since their stroke ranged from two months to four years, with an average of 18 months.
"Work is currently in progress -- driven by the recent Northern Ireland Stroke Strategy -- throughout the province to address the gap in service provision for the promotion of long term psychological adjustment for stroke survivors and their carers."
As a result of the study, which was part funded by Northern Ireland Chest Heart and Stroke the researchers have come up with four key recommendations for health care professionals.
- Nurse education should focus on both the physical and psychosocial effects of stroke so that nurses can provide holistic care to stroke survivors and their spouses.
- Health care professionals and service providers must recognise and be sensitive to the profound impact of stroke on sexuality and sexual function.
- Statutory counselling services should be available to people with stroke and their spouses on both an acute and long-term basis to help them cope with the complex issues described.
- Evidence-based guidance is needed to demonstrate how nurses can address the psychosocial needs of stroke survivors most effectively.