Family caregivers' experience of activities of daily living handling in older adult with stroke: a qualitative research in the Iranian context

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For each successive 10 years after 55 years of age, the stroke rate more than doubles in both men and women, and 65% of all strokes occur in individuals older than 65 years 1. In most countries, stroke is the second or third most common cause of death and a main cause of acquired adult disability 2. According to World Health Organization estimates, 15 million people suffer strokes each year and five million are left permanently disabled 3. The annual incidence rate of stroke is estimated 139 per 100 000 of Iran population 4. Approximately 30% of stroke patients will make an incomplete recovery, although they will not necessarily require assistance with usual care activities; a further 20% will require assistance with at least one activity 5. Stroke may lead to heavy burden of disability for patients, their family caregivers and the community in general 6. Stroke occurs suddenly, is traumatic and leaves patients and families unprepared for dealing with its aftermath. It is a complex, life‐changing experience for both stroke survivors and their family caregivers 7. Outcome data consistently indicate that about two‐thirds of stroke survivors have chronic neurological impairments that affect their activities of daily living (ADL), especially their mobility 8. Evidently, 12–18% of stroke patients are dysphasic, 22% unable to walk, 32% clinically depressive and 24–53% remain dependent on family caregivers for activities of daily living 9. Even with identical stroke severity, increasing age is associated with greater disability in activities of daily living (ADLs) and mobility. Because most patients with stroke survive the initial illness, the greatest health effect is usually caused by the long‐term consequences for patients and their families 9. Stroke rehabilitation programmes aim to optimise neurologic recovery, teach compensatory strategies for residual deficits, teach activities of daily living (ADL) and skills required for community living 10. Reducing activity restrictions (disabilities) that result from impairments is one of the stroke rehabilitation goals 11. Patients with stroke require additional support from family to live independently 12. Family members are usually the main caregivers of stroke patients within Iranian social and cultural context, too 13. According to a study, shortcomings in the rehabilitation and home care services are the main contextual issues in some countries such as Iran 14. Thus, the family provides the most critical resource for integrating and coordinating health care for its members 15. A family caregiver is a person lives daily with the elderly, providing them assistance with hygiene care, giving them comfort, helping with feeding, encouraging them to do rehabilitation activities and interacting with the therapeutic team 16. More and more long‐term care is provided at home and in the community than in nursing homes. Millions of family caregivers make this possible each day 17. Most patients have families that are providing some level of care and support. In the case of older adults and people with chronic disabilities of all ages, this ‘informal care’ can be substantial in scope, intensity and duration 18. The significance of holistic care for patients undergoing stroke rehabilitation is becoming better recognised and vocalised, and there is a greater acknowledgement of the importance of family involvement in patient outcomes 19. Family members often play an integral part of the recovery process and serve as caregivers for many stroke survivors 20. Roughly 68–74% of stroke survivors are discharged home under the care of family members 10. Against the backdrop of growing numbers of people with disabilities needing long‐term services, reliance on family and other informal caregivers is growing 17.

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