by Julie Luker
A stroke affects the life of not only the stroke survivor, but also the lives of partners, children, wider family and friends. Other people’s lives are particularly affected if they take on the role of caring for a person with stroke.
While treatments for stroke recovery are improving steadily, most stroke survivors (65%) will need ongoing help from carers for their daily living activities. In 2009, more than 26,000 Australians were providing help for someone with a stroke, with most carers spending the equivalent of a full-time working week (i.e. over 40 hours each week) assisting the person with stroke.
Stroke survivors who have not regained full function should receive rehabilitation by skilled professionals to help them recover and regain an acceptable quality of life. But what happens to the family members who suddenly find themselves in the unexpected role of carer? How are they assisted to prepare for their new responsibilities? These questions inspired us to conduct this research.
What we did
In this review we searched for studies in which carers’ experiences, needs and preferences while their ‘significant other’ undertook stroke rehabilitation as an inpatient were explored using interviews, focus groups or questionnaires. We identified 33 studies from 10 different countries, that provided information from 452 carers. When we analysed the information provided by these carers several important themes were found.
What carers reported
Carers reported feeling overwhelmed by emotions as they tried to navigate their way through an alien health system and environment. They were distressed by the uncertainty of the future and the responsibilities they carried for supporting and advocating for the person with stroke. They wanted staff not only to prepare them for the worst but also provide a sense of hope for recovery. Emotional and practical support from staff, family, and particularly other carers could ease their distress.
Carers wanted to actively contribute to the recovery of the stroke survivor and be included in the rehabilitation process. They were frustrated when staff did not involve them in therapy or make use of their expert understanding of the person with stroke.
A lack of information and exclusion from decision-making left carers feeling powerless and low in confidence. They wanted staff to be sensitive to their needs and be proactive in providing information in different ways. However many people experienced the need to ‘keep fighting’ or ‘begging’ for information or to get the care they felt the person with stroke needed.
Based on staff behaviour, some carers felt that they were not legitimate clients in the rehabilitation process. Many lamented that carer training was not available to them. Despite the pivotal role carers have in enabling the stroke survivor to transition to home, the lack of a family-centered approach to rehabilitation left many feeling unsupported and unprepared for their new role.
The effects of stroke on families is considerable. In stroke rehabilitation settings, health professionals should make deliberate efforts to ensure that there are systems in place that help carers to easily access support, information and training for their new roles, based on their individual needs and preferences.
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