‘You do know he’s had a stroke, don’t you?’ Preparation for family care‐giving – the neglected dimension

Abstract

Countries throughout the developed world have introduced a policy of community care for older people to reduce costs to the state and maintain quality of life. In reality community care is largely family care and recognition of the need to support family carers is being promoted through the notion of partnership with professional carers. Such a partnership calls for a more complete understanding of how carers' needs change over time and how professional support can be most effective. Support is particularly important at the start of care-giving in order that carers can exercise free choice and be adequately prepared for their role. This paper provides an overview an ongoing longitudinal study and reports specifically on the findings of data from a preliminary study in which a convenience sample of seven experienced carers of stroke survivors who attended a stroke and carers club were interviewed in their own homes. Based on initial data from a longitudinal study of stroke victims, this paper outlines four themes: 'What's it all about', 'Going it alone', 'Up to the job' and 'What about me?' These themes highlight the difficulties carers experience in the immediate aftermath of stroke.

“Timing It Right”: A conceptual framework for addressing the support needs of family caregivers to stroke survivors from the hospital to the home

“…Caregivers are often anxious and express concern for their family member's immediate survival. This phase is consistent with caregivers desire to understand ''What's it all about'' [41].…”

“…Although there are numerous studies describing caregivers support needs, only a small number of studies made specific reference to the time in the illness trajectory that these needs occurred. Therefore, we used primarily 11 studies in combination with the clinical course for stroke to inform the TIR framework [28,[39][40][41][42][43][44][45][46][47][48].…”

Psychosocial Functioning of Spouses of Patients With Stroke From Initial Inpatient Rehabilitation to 3 Years Poststroke

“…In a qualitative study, 28 which followed family caregivers over an 18-month period, the caregivers reported that caregiving became more routine and that their expertise and competence grew over time. Depressive symptoms are common among patients and spouses in the early stages after stroke.…”

Qualitative Studies of Stroke

“…87 The specific needs for support identified by carers include information about the long-term implications of stroke and the availability of community services. 90,92,94,98 Reported solutions suggested by carers include access to advisers, opportunity for regular reassessments of the patient, improved access to day care and respite care, carer support groups, and access to emergency calls for support. 94 Simon and Kumar (2002) reported that caregivers felt that they were not adequately consulted and considered by professionals.…”