Supporting Patients, Families and Caregivers

Stroke is a life-altering event that may require an extended recovery period and often leaves patients with ongoing functional impairments. Increasingly, families and informal caregivers are expected to take on tasks and responsibilities that require knowledge and skills that may be beyond their scope. This increases the caregiver burden, which often results in depression among caregivers of stroke patients (as high as 60 percent has been reported).

Similar post-stroke depression rates occur in patients and are linked to poorer recovery outcomes.

• Protocols to involve families in healthcare team transition planning meetings and collaborative discussion of goal setting at all transition points.
• Resources and mechanisms to plan and deliver community-based services which consider the needs of the survivor and family/caregiver (e.g., home care services)
• Models of care that include technology such as telemedicine, regular telephone follow-up and web-based support.

1. The change in burden of care for family members and informal caregivers measured at defined intervals throughout the recovery period following stroke and at transition points.
2. The number and percentage of patients diagnosed with post-stroke depression, measured at each transition point as a proportion of all stroke patients.

Measurement Notes

• Standardized and validated measures of depression and caregiver burden should be used to track occurrence and changes to these areas.

• Canadian Stroke Strategy Patient and Family Guide to Stroke Best Practices
• Timing it Right
• Care Transition Measure ⁴⁹¹

Cameron and Gignac conducted a conceptual review to discuss family caregivers of stroke survivors changing needs for education and support across the care continuum.⁴⁹²Through this review they developed a framework known as “Timing is Right.” The five stages discussed are 1) event/diagnosis; 2) stabilization; 3) preparation; 4) implementation; 5) adaption. The first two phases occur during acute care, the third occurs during acute care and/or in-patient rehabilitation, and the final two phases occur in the community. During phase one (event/diagnosis) caregivers often focus on the current health event and treatment and whether or not the event is deemed life threatening by healthcare professionals. Phase two (stabilization) occurs in the acute care centers. Healthcare professionals determine the extent of the disability resulting from the stroke. Caregivers often appear calmer or express some relief in this phase, but they generally have yet to realize the extent of the physical and cognitive disability experienced.

Phase three (Preparation) occurs before the patient returns home.  At this time, the patient’s medical condition has stabilized and the clinical emphasis is on preparing the patient to ultimately return home.   As discharge approaches, caregivers become increasingly concerned about their abilities to provide care in the home and they specifically want information and training to assist with the provision of physical care in the home and signs of potential problems. Caregivers may also seek information about community services and assistance so they can submit applications to appropriate organizations or plan ahead.  Many caregivers may experience additional strain as they struggle to partially re-establish existing family and work routines. Phase four (implementation) occurs when the patient returns to the home environment.  At this time, the responsibility for providing care shifts from health care professionals to family caregivers. Patients are learning how to adapt to living in their home environment. Caregivers are ‘‘learning the ropes’’ as they attempt to apply the skills they have learned in the acute or rehabilitation environments to helping their family members in the home environment. Their focus is often on the provision of physical care as they attempt to develop routines.  Phase five (adaptation) occurs when the home routine has been established and the stroke survivor and family caregiver begin to shift their attention to resuming usual activities in the community (i.e., community re-integration). Caregivers are actively supporting stroke survivors community re-integration including trying to find activities and work that are accessible (if needed). In addition, caregivers will develop strategies so they can resume their valued activities (e.g., respite, day programs, etc). Application of this framework has the potential to benefit future intervention efforts by identifying gaps in caregiver education, training and support.

Visser-Meily and coworkers conducted a literature review that included ten randomized controlled trials and four non-randomized studies focused on the transitions of care and needs of families and caregivers. The RCTS identified four main intervention approaches.⁴⁹³The first, Providing specialist services, includes interventions directed at improving and facilitating discharge from hospital. Typically a stroke nurse or stroke organizer visited the patient and family to give information about health services and therapies available in the community and to give advice and emotional support to both stroke patients and their caregivers. The trials found significant overall improvements for caregivers including emotional state, satisfaction with care, increases in knowledge, and improvements in health relation quality of life and social activities of daily life. In six trials, the intervention and control groups did not differ for caregiver outcomes. In two trials, however, negative caregiver outcomes were reported in the intervention groups: a worse state of general health among caregivers in one RCT and dissatisfaction with provision of information coupled with a greater caregiver burden in the other.

The second intervention approach is Psychoeducation, based on five randomized controlled trials. Education was directed at gaining general knowledge about stroke or more specific knowledge about cognitive aspects. Three of the five trials reported significant improvements for caregivers. Positive effects included an increase in knowledge about and improvements in mental health. One trial reported an increase in knowledge but deterioration in social functioning in the intervention group. The third intervention, based on four trials, addressed Counseling needs. Counseling elements included learning of goal setting, problem solving, and coping strategies. Three trials found significant improvements for caregivers following counseling. Positive effects included facilitating and maintaining adaptive changes in family function; improvements in problem solving skills and measures of vitality, greater caregiver preparedness, and less depression; and increases in knowledge about care, use of active coping strategies, and seeking social support. The fourth intervention of Peer support was not addressed in any randomized trials and remains an ongoing gap in research knowledge.

Kalra and collaborators performed a randomized controlled trial with a structured caregiver training intervention (n=151) or usual care (n=149).⁴⁹⁴ Usual care was comprised of information on management of stroke; involvement in goal setting and discharge planning; informal instruction on facilitating transfers, mobility, and ADL; and information on community services and benefits. Structured caregiver training comprised usual care plus three–five sessions (30– 45 min each) and an at home session of instruction and relevant hands-on training (tailored to individual patients) on pressure ulcer prevention, continence, nutrition, positioning and lifting, mobility and transfers, gait facilitation, ADL, and communication. At twelve months, patients in the caregiver training group had improved mood and quality of life, but did not differ from the usual care group for mortality, institutionalization, or function. Caregivers in the training group had improved mood and quality of life and reduced burden of care compared with the usual care group groups did not differ for caregiver function. Mean costs of care over one year were lower in the training group than in the usual care group.

Visser-MiIley and coworkers examined 211 couples shortly after the patient’s admission to a rehabilitation center, two months after discharge, one year post stroke and three years poststroke to assess the changes in psychosocial functioning of spouses (burden, depressive symptoms, harmony in the relationship between patient and spouse).⁴⁹⁵A significant effect of time (P<0.01) was found for all four aspects of spouses’ psychosocial functioning. Although burden decreased, harmony in the relationship and social relations also decreased. The depression score showed a nonlinear pattern with an initial decrease but a long-term increase. All outcomes were significantly related to caregiver coping strategies. A total of 15 percent to 27percent of the variance in psychosocial functioning could be explained. Findings highlight the need to monitor the long-term psychosocial functioning of spouses of patients with stroke as part of a family-centered approach. Not only burden, but also depressive mood, harmony in the relationship, and social relations are aspects of psychosocial functioning that need more attention, as demonstrated by results of negative long-term effects of stroke on these aspects of caregiver quality of life. Because passive and active coping strategies were most strongly associated with the course of psychosocial functioning, assessment of these spouses’ coping strategies should be a routine part of stroke care. Psychosocial interventions should, if applicable, teach spouses how to cope actively with the consequences of the stroke, how to decrease the negative consequences for family functioning and harmony in the relationship, and how to ask for support.

Bjorkdahl and collaborators conducted a randomized controlled trial (n=36) to evaluate if an intervention with information about stroke and its consequences, as well as practical advice and training in the home setting reduces or affects the burden of care for next-of-kin.⁴⁹⁶ Rehabilitation in the home setting was compared with outpatient rehabilitation. In the home setting, counseling about the stroke and its consequences was included. The burden of the two groups did not differ. After the intervention, there was a tendency to a lower burden for the home setting. The burden for the home setting was then unchanged from three weeks to one year, while outpatient rehabilitation showed a reduced burden over time. For the home setting, significant correlations to activity level were seen after the intervention. Findings suggest that information and counseling have a positive affect both on patient outcome and caregiver burden

High physical dependence, advancing age, and increased anxiety in caregivers or patients and poor family support are simple and easily assessable measures of caregiver risk, which can be used in clinical practice to target caregiver interventions. McCullagh and coworkers conducted a randomized controlled trial (RCT) of caregiver training y in stroke patients undergoing rehabilitation.⁴⁹⁷Stroke patients had a mean age of 74±11 years, and 120 (52%) were men. The mean age of caregivers was 65.7±12.5 years, 149 (64%) were females, and 116 (50%) had received caregiver training. The mean caregiver burden score was 48±13 and 38±11 (score range of bad to good 88 to 22) and QOL score was 75±16 and 75±15 (score range of bad to good 0 to 100) at 3 months and 1 year, respectively. CBS and QOL correlated with each other and with patient (age, dependency, and mood), caregiver (age, gender, mood, and training), and support (social services and family networks) variables. Of these, only patient and caregiver emotional status, caregiver age and gender, and participation in caregiver training were independent predictors of either outcome at three months. Patient dependency and family support were additional independent predictors at one year. Social services support predicted institutionalization but not caregiver outcomes.

Smith and coworkers conducted a qualitative study to learn about family caregivers experiences and support needs during the rehabilitation phase.⁴⁹⁸Nine caregivers participated in 40-60 minute in-depth qualitative interviews within the first six months post stroke. An overriding theme was differences in personal needs between older and younger caregivers. Five younger caregiver (≤55 years of age) and four older caregivers (>55 years of age) were interviewed. Younger caregivers identified informational support and training as important parts of their social support whereas older caregivers did not. Younger caregivers were also more likely to complain or criticize the healthcare system and staff than older caregivers. A common theme among older caregivers was to focus on the importance of keeping a positive outlook throughout the experience. The results from this study suggest that support programs should consider age as a factor when tailoring interventions.

Blonder and collaborators examined the effects of patient neurobehavioral characteristics such as hemispheric side of stroke, language, affect perception, stroke severity, and mood on caregiving partners’ mood, perceptions of psychological stress, and marital satisfaction the negative correlation between patient depression and spousal marital satisfaction was statistically significant (r_s= −0.585, p = 0.007).⁴⁹⁹ There was also a trend for hemispheric side of stroke to correlate with spousal stress (r_s= 0.498, p = 0.025), such that strokes in the left hemisphere were associated with greater stress, whereas strokes in the right hemisphere were associated with less stress. These results show that patient depression in particular constitutes a risk factor for marital dissatisfaction in the first few months following stroke. Given that spousal partners provide a large portion of informal support to stroke patients, successful treatment of patient depression may have benefits at the level of the individual, family, and community.

Van den Heuvel and collaborators attempted to identify caregivers at high risk for burn-out, and to find indications regarding the organization of an intervention for caregivers of stroke patients through structured interviews.⁵⁰⁰The majority of the 212 caregivers interviewed were women, mostly patients’ spouses. Their mean age was 64 years (SD 10.14).  ‘Confidence in own knowledge’ consisted of two factors: perceptions of the disease, resources and patient care (alpha = 0.94), and perceptions of self-efficacy (alpha = 0.86). The two factors together explained 49.5% of the total variance. From this point the first factor will be called confidence in knowledge about patient care, and the second factor confidence in knowledge about self-efficacy Severe cognitive, behavioural and emotional changes in the patient constitute the main risk factors for caregiver burn-out. Women, younger caregivers and caregivers in poor physical health were also identified as risk groups. Caregivers with high-perceived self-efficacy, satisfied with social support, and frequently using the coping strategy confronting, experience less strain, higher mental well-being and greater vitality. Duration of the caregiver role does not influence caregivers’ strain, mental well-being or vitality. Support programs should focus on self-efficacy, social support, and the coping strategy confronting. No specific moment could be identified at which support programs should be offered.