Supporting the Needs of Stroke Caregivers Across the Care Continuum
Journal of Clinical Outcomes Management. 2016 December;23(12)
References
Research also suggests that stroke survivor outcomes are influenced by the ability of the family caregiver to provide emotional and instrumental support as well as assistance with BADL/IADL [6,35]. As the caregiver’s health decreases, the stroke survivor’s health and recovery will also likely suffer and ultimately may result in re-hospitalization or nursing home placement. For example, Perrin et al found a consistent reciprocal relationship between caregiver health and stroke survivor functioning, such that the quality of caregiving may be affected by caregiver burden and depressive symptoms, which in turn can impair the functional, psychological, and emotional recovery of the stroke survivor [21]. Studies have also linked poorer caregiver well-being to increased depressive symptoms in stroke survivors [36,37].
In a review of 27 studies with data from approximately 6000 patients and 3000 caregivers, 5 post-stroke problem areas and ranges of prevalence were identified ( Table 1 ). The authors noted a need for “a longer-term holistic approach to the rehabilitation of stroke patients and support for carers” [38].
Positive effects of caregiving have also been reported, including a feeling of confidence, satisfaction in providing good quality care [30,39,40], an improved relationship with the care recipient [30,40,41], having greater life appreciation, and feeling needed and appreciated [40]. In a systematic review of 9 studies, improvements in the stroke survivor’s condition was a source of positive caregiving experiences [40]. In 2 studies, two-thirds of caregivers surveyed affirmed all survey items related to positive aspects of caregiving [30,42]. Additionally, studies have demonstrated that caregivers who engaged in emotion- and problem-focused coping strategies had positive caregiving experiences [40]. Haley et al found that by 3 years post-stroke many of the ill effects of caregiving had resolved, suggesting that some caregivers may be successful in adapting to their “new” post-stroke lives [23].
Understanding the difficulties and issues faced by caregivers throughout the trajectory, from immediately following the stroke through the transition home and, ideally, the adaptation of the caregiver to this new life, provides an opportunity for health care professionals to intervene with strategies to support this major life change.
Caregiving Trajectory and Ongoing Needs of Stroke Caregivers
Stroke survivors and their family caregivers rapidly move from intensive therapy and nursing case management while in a facility to little or no assistance following discharge. Despite case management and discharge planning services received while in an institutional setting, the transition from inpatient care to home can be a crisis point for caregivers [9]. They describe having to figure things out for themselves with little or no formal support after discharge [9,43,44], leaving them feeling overwhelmed, exhausted, and abandoned once they return home [9].
These family members rarely make an active choice to become caregivers; rather, they take on the role because they are unable to perceive or access any other suitable alternatives [8,45]. Whatever their circumstances, these devoted family members are particularly vulnerable as they transition into the caregiving role without an adequate support system for assessing and addressing their needs [7–9,46]. Without this assistance, caregivers develop their own solutions and strategies to meet the needs of the care recipient after discharge [47,48]. Unfortunately, these strategies are often ineffective and may result in safety risks for patients (eg, falls, skin breakdown, choking), and care-related injuries (eg, falls, muscle strains, bruises) and increased stress and anxiety for caregivers [48–50].
