A comprehensive assessment of family caregivers of stroke survivors during inpatient rehabilitation

Abstract

Purpose: Stroke caregivers have been identified as a group at high risk for poor outcomes as a result of the suddenness of stroke and a potentially high level of care needed due to significant functional limitations of the patient. However, there is little research on the assessment of family members who will assume the caregiving role prior to patient discharge from rehabilitation. The purpose of this article is to delineate critical assessment domains identified by a subset of spousal stroke caregivers. Methods: Semi-structured interviews were conducted pre- and post-discharge from rehabilitation as part of a larger study that focused on identifying caregiver and stroke survivor needs as they transitioned home from inpatient rehabilitation. For this study, two semi-structured interviews with 14 spousal caregivers were analyzed using grounded theory methods. Results: Long-term stroke survivor outcomes were dependent upon the commitment, capacity and preparedness of the family caregiver. Twelve domains of assessment were identified and presented. Conclusions: A comprehensive, systematic caregiver assessment to understand the caregiver’s concerns about stroke should be conducted during rehabilitation to help the team to develop a plan to address unmet needs and better prepare family caregivers to take on the caregiving role.

• Implications for Rehabilitation

• Stroke is a sudden event that often leaves stroke survivors and their families in crisis.

• The needs of stroke family caregivers are not often systematically assessed as part of inpatient rehabilitation.

• Long-term stroke survivor outcomes are dependent upon the commitment, capacity and preparedness of the family caregiver.

• Stroke caregiver assessment should include the commitment, capacity and preparedness to provide care, and the overall impact of stroke in order to develop discharge plans that will adequately address the needs of the stroke survivor/caregiver dyad.

     

Therapists’ perspectives on adapting the Stepping On falls prevention programme for community-dwelling stroke survivors in Singapore

Abstract

Purpose: This study investigates the perspectives of rehabilitation therapists on the implementation of fall prevention programmes with community-dwelling stroke survivors in the Singapore context, and elicits recommendations to adapt the Stepping On programme with stroke survivors.

Method: Qualitative data were elicited during 4 focus groups with 23 rehabilitation therapists (15 occupational therapists [OTs]; 8 physiotherapists [PTs]) who had received training to deliver the original Stepping On programme, and had experienced delivery of fall-prevention intervention programmes locally. Collected data were analysed using thematic analysis method.

Results: Three themes emerged from the focus groups describing: (a) limitations of existing falls prevention intervention for stroke clients; (b) the need to adapt the Stepping On programme to use with stroke clients; and (c) challenges in implementing fall prevention programmes in the stroke context. A series of new components were suggested to be included as part of the Stepping On after stroke (SOAS) programme, including involvement of family members and caregivers, and tailored community reintegration sessions (such as taking public transport and shopping).

Conclusions: Rehabilitation therapists describe challenges in addressing fall prevention within a stroke context, and findings highlight the need for a structured, stroke-specific fall prevention programme rather than a more general approach to education and training. Contextual components identified provide valuable inputs towards the development of a culturally relevant fall prevention programme for stroke survivors in Singapore.

• Implications for Rehabilitation

• Stroke survivors living in the community are at a high risk of falls.

• A structured and culturally relevant fall prevention programme for community-living stroke survivors is needed.

• Falls prevention for community-living stroke survivors should be multi-dimensional and targeting the modifiable risk factors for falls in this group.

• Both stroke survivors and caregivers should be involved in any fall prevention after stroke programmes.

     

Quality of life perceptions of family caregivers of older adults stroke survivors: A longitudinal study

BackgroundThere are few formal outreach and out-patient support services to help family caring for older adults who have had a stroke in developing countries. Family caregivers experience negative changes in their quality of life.AimTo assess quality of life perceptions of spouse and non-spouse caregivers of older adult stroke survivors.MethodsA longitudinal survey study. A convenience sample of forty-eight family caregivers was recruited from the Special Care Stroke Unit at a University Hospital in South Brazil. Quality of life was measured using the World Health Organization's Quality of Life BREF survey upon discharge from the hospital (Time 1) and two months after (Time 2).ResultsNon-spouse caregivers had the lowest Social Relationship scores at Time 1 (p < .001) and at Time 2 (p = .005), both in terms of personal relationship, the quality of their sex lives and support received from others.ConclusionUnfortunately, formal community support programs for family caregivers in Brazil are lacking. Post-stroke caregiving is largely a family affair. Quality of Life assessments among family caregivers of older adult stroke survivors are crucial, particularly after discharge.     

Home-based psychoeducational and mailed information programs for stroke-caregiving dyads post-discharge: a randomized trial

Abstract

Purpose: This randomized trial compared 6- and 12-month outcomes of a home-based psychoeducational program to mailed information provided to 159 survivors of stroke (SS) and their spousal caregivers (CG). Methods: SS (age 50+) and CG were recruited as dyads post-discharge from inpatient rehabilitation. All dyads received mailed information for 12 months. Dyads randomized to the home-based group received an average of 36.7?h of psychoeducation over 6 months. Health status, depression, stress, burden, coping, support, mutuality and function were obtained on all dyads. Repeated measures analysis with linear mixed models was used to compare the groups for change over time in the outcome variables. Results: Both groups demonstrated less depression and stress over time. Compared to the mailed information group, SS in the home-based group demonstrated significantly improved self-reported health and cognitive function; CG demonstrated significantly improved self-reported health and coping strategies. Mutuality and social support decreased in both groups. Conclusions: The home-based intervention was effective in improving self-reported health, coping skills in CG and cognitive functioning in SS. However, the finding that dyads in both groups demonstrated decreased depression and stress suggests that providing repeated doses of relevant, personalized information by mail may result in positive changes.

• Implications for Rehabilitation

• A stroke affects both the stroke survivor and the spousal caregiver, so nurses and therapists should use multicomponent strategies to provide education, support, counseling and linkages to community resources to ease the transition from hospital to home.

• Stroke may have a negative impact on the dyad’s relationship with each other and also on the availability of support people in their lives during the 12 months after hospital discharge. Comprehensive stroke programs should encourage dyads to attend support groups and to seek individual and group counseling, as needed.

• Establishing an ongoing relationship with stroke survivors and their spouses and providing relevant and engaging information by mail can reduce stress and depression over 12 months post-discharge at a minimal cost.

• Nurses and therapists should consider home visits post-discharge to reinforce education and skills taught in the hospital, increase self-reported health in stroke survivors and spousal CG, increase coping skills and to link the couple to community resources.

     

Relationships between family resilience,breast cancer survivors’ individual resilience,and caregiver burden: A cross-sectional study

BackgroundCaregivers of breast cancer survivors experience various types of burden, which in turn is linked to patients’ physical and psychological status. Family resilience might be able to decrease caregiver burden and facilitate survivors’ individual resilience, and individual resilience might be related to caregiver burden. Nevertheless, these relationships have not yet been confirmed.ObjectiveTo determine the relationships between family resilience, breast cancer survivors’ resilience, and principal caregivers’ caregiver burden, as well as determine whether breast cancer survivors’ individual resilience plays a mediating role in the relationship between family resilience and caregiver burden.DesignCross-sectional study design.SettingThe comprehensive cancer center of a public hospital in Shandong Province, China.ParticipantsThe sample comprised 108 dyads of early-stage breast cancer survivors and their principal caregivers.MethodsThe principal caregivers completed the Shortened Chinese Version of the Family Resilience Assessment Scale and the Chinese Version of the Zarit Caregiver Burden Interview, while the breast cancer survivors completed the 10-item Chinese version of the Connor-Davidson Resilience Scale and provided their sociodemographic information. The mediating effect of individual resilience was estimated using the bootstrap method via IBM SPSS Amos 21.0.ResultsCaregiver burden was significantly negatively associated with both family resilience and breast cancer survivors' individual resilience (both p < .01). Furthermore, individual resilience mediated the relationship between family resilience and caregiver burden (b = −0.052; 95% confidence interval: −.412, −.036).ConclusionsThe findings suggest that both family resilience and breast cancer survivors’ individual resilience may ease caregiver burden among the principal caregivers of breast cancer survivors, and family resilience tends to promote the survivors’ individual resilience. Therefore, family resilience and survivors’ individual resilience should be enhanced for breast cancer survivors and their family to ease the principal caregivers’ caregiver burden.     

Family caregiving challenges in advanced colorectal cancer: patient and caregiver perspectives

Purpose

Family caregivers of advanced colorectal cancer patients may be at increased risk for psychological distress. Yet their key challenges in coping with the patient’s illness are not well understood. Soliciting both patient and caregiver perspectives on these challenges would broaden our understanding of the caregiving experience. Thus, the purpose of this research was to identify caregivers’ key challenges in coping with their family member’s advanced colorectal cancer from the perspective of patients and caregivers.

Methods

Individual, semi-structured qualitative interviews were conducted with 23 advanced colorectal cancer patients and 23 primary family caregivers. Interview data were analyzed via thematic analysis.

Results

In nearly all cases, patient and caregiver reports of the caregiver’s key challenge were discrepant. Across patient and caregiver reports, caregivers’ key challenges included processing emotions surrounding the patient’s initial diagnosis or recurrence and addressing the patient’s practical and emotional needs. Other challenges included coping with continual uncertainty regarding the patient’s potential functional decline and prognosis and observing the patient suffer from various physical symptoms.

Conclusions

Findings suggest that eliciting the perspectives of both patients and caregivers regarding caregivers’ challenges provides a more comprehensive understanding of their experience. Results also point to the need to assist caregivers with the emotional and practical aspects of caregiving.

     

Patient-centered mobility outcome preferences according to individuals with stroke and caregivers: a qualitative analysis

Purpose: To explore the mobility-related preferences among stroke survivors and caregivers following post-acute rehabilitation at inpatient or skilled nursing facilities.

Methods: In this cross-sectional study; semi-structured, qualitative interviews of stroke survivors (n?=?24) and informal caregivers (n?=?15) were conducted. The participants were recruited from the community.

Results: Comparative content analysis was used to identify themes by two independent coders. The survivors (68 years) and caregivers (58 years) mentioned mobility-related consequences including inability to walk, balance, drive, and transfer; and increased falls. The survivors (63%) and caregivers (73%) also mentioned the use of assistive devices. The common rehabilitation activities included: walking (62%); followed by standing and mobility; strength and balance; and wheelchair skills. Some stroke survivors were dissatisfied as their rehabilitation was not patient-centered. Frequently mentioned outcome preferences by survivors were ability to walk (88%), move, and balance. They also wanted to acquire assistive devices to move independently. Caregivers were concerned with the survivor’s safety and wanted them to drive (53%), prevent falls, have home accommodations, and transfer independently. Caregivers (40%) also expressed the importance of receiving realistic information.

Conclusions: This study suggests a need to consider the stroke survivors’ and caregivers’ mobility outcome preferences to improve the patient-centered rehabilitation care.

• Implications for Rehabilitation

• Stroke survivors and caregivers tend to differ in their outcome preferences.

• Caregivers expressed concern for transfers, driving, fall prevention, home modifications, and wished for realistic information.

• Incorporating stroke survivors and their families’ perspectives during rehabilitation may enhance patient-centered outcomes.

     

Burden of family caregivers with schizophrenic patients in Korea.

The purpose of the study was to test a staged causal model as the theoretical base to determine the relationships among knowledge, coping, and burden among Korean family caregivers with schizophrenic patients. The staged theoretical model contained three stages comprised of contextual variables (stage 1), interactional variables (stage 2), and perception variables (stage 3). The situational variables were caregiver knowledge, gender and age of family caregiver, duration of family caregiving, and the nature of the relationship between patient and family caregiver. The interactional variable was represented by two styles of copings (positive and negative). The perception variable was the perception of subjective burden. A total of 57 family caregivers with schizophrenic patients participated in this study. The instruments, Knowledge Scale, Coping Scale, and Burden Scale, were used. A path analysis was used in this model. The family caregiver's knowledge had an indirect impact on the burden through negative coping, indicating that the less caregiver's knowledge, the more caregivers use negative coping strategies, which results in caregiving perception of subjective burden. The results support that interactional outcome of coping mediates the relationships between caregiver's knowledge and the impact of subjective outcome of caregiving burden.     

Body,coping and self-identity. A qualitative 5-year follow-up study of stroke

Abstract

Objective: The purpose of this article is to identify, from a long-term perspective, stroke survivors’ self-identity, their views of any associated disabilities and how they manage their lives after stroke. Methods: The interviews and analyses were conducted using a phenomenological qualitative method. A total of 10 men and 5 women, aged 42–84, participated. All had suffered first-time stroke 5 years earlier. Results: After 5 years, participants had greater acceptance of their situation compared with immediately after participating in the rehabilitation programme. However, they described how they still had to deal with the consequences of stroke. They had suffered further illnesses and additions to side effects of the stroke. In dealing with their disabilities and changes to self-identity and life patterns, they seemed to be in a continuous process of change that never truly stabilised. They coped with this continuous process in at least two different ways, including resignation or personal growth. Conclusion: Stroke survivors suffered considerable ongoing and changing difficulties in relation to disability, self-perception and to coping with a new life. This continuous process of change could be seen to drain their energy. The study shows that many survivors live a more home-centred life with fewer social relations and less active participation in their community. This can entail the risk of depression and loneliness. The study also shows, however, that adopting an optimistic approach to life can lead to continued learning about abilities and limitations, to the development of new skills and to the fashioning of a new self-identity.

• Implications for Rehabilitation

• This study suggests that stroke survivors should be offered individualised rehabilitation programmes that address not only physical activities but also psychological circumstances and existential issues. It is recommended that the interventions offered to the stroke survivor are unfolded through a pedagogical approach, so the individuals do not feel alienated or need to struggle in isolation. The programme should promote the individual’s motivation, the sense of being able to cope and an optimistic view of life.

• There is a need for further research focusing on identifying the factors that facilitate the individual’s positive approach to life and optimism. There is also the need to examine a variety of approaches to rehabilitation that emphasise empowerment and self-efficacy for stroke individuals in a variety of phases of rehabilitation and with various degrees of disability.

     

Quality of life and burden of informal caregivers of stroke survivors

Stroke rehabilitation has concentrated on patient-focused intervention, which has reduced the level of disabilities and has increased the number of stroke survivors being managed at home by caregivers. This study was aimed at determining the level of strain experienced by the caregivers of stroke survivors and the quality of life (QoL) of these caregivers. The QoL and caregiving burden among informal caregivers of stroke survivors seen at the physiotherapy outpatient clinic of two hospitals in south-western Nigeria were documented. Participants completed the Personal Wellbeing index for QoL measurement and Modified Caregivers Strain Index for measurement of Caregivers Burden Score. A total of 130 informal caregivers of stroke survivors participated in this study. The mean age of caregivers was 41.1 ± 14.0 years, while that of stroke survivors was 60.4 ± 10.9 years. Among the stroke survivors, 75 (57.8%) were female, whereas 74 (56.9%) of the caregivers were males. The results showed that caregivers' burden was inversely correlated to their QoL (p < 0.001). The lower functional status of the stroke survivors, as recorded by modified Rankin score and Barthel Index, was significantly associated with lower QoL and higher caregiver strain index of the caregivers.     

Family caregiving of individuals with traumatic brain injury in Botswana

Background The impairments that affect survivors of TBI impact the person’s independence, and family members frequently have to take on a caregiver role. This study examined the experience of caregiving for individuals with TBI in Botswana and its impact on psychological distress in caregivers. Methods Using a mixed methods study design, qualitative data from semi-structured interviews were thematically analyzed and triangulated with data regarding functional status from the Structured Head Injury Outcome Questionnaire and the Hospital Anxiety and Depression Scale (HADS). Results The study included 26 participants with moderate to severe TBI, and a total of 18 caregivers were recruited. Caregivers commonly reported receiving limited information regarding their relatives’ injuries and management methods. Heavy caregiving demands were placed on them, with little support from the healthcare system. A significant proportion of caregivers experienced anxiety and depression, which was associated with lower functional independence in their injured relative. Somewhat more spouses than parents reported clinically significant anxiety levels. Other consequences of caregiving included social isolation and limited support from the wider community as well as financial difficulties. Despite these stresses caregivers tended to accept their caregiving role. Cultural factors such devotion to their families and faith and belief in God moderated burden and distress. Conclusions Carers of individuals with TBI in Botswana face significant challenges. Rehabilitation efforts need to take these into account. Specifically, more information and support needs to be provided to survivors and their families. Psychological, economic and health needs of the care providers also should be addressed in the planning of rehabilitation interventions.

• Implications for Rehabilitation

• Caregivers of individuals with TBI in under-resourced countries carry much of the burden of care, face many challenges and experience significant stress.

• More information and support needs to be provided to survivors of TBI and their families in countries such as Botswana in a culturally sensitive manner.

• Psychological, economic and health needs also need to be addressed in the planning of rehabilitation interventions, which are currently non-existent in Botswana.

     

The mediating effect of caregiver burden on the caregivers’ quality of life

[Purpose] Quality of life (QoL) can be closely related to caregiver burden, which may be a potential mediating effect on the relationships among stroke patient caregivers. This study investigated the predictors of caregiver’s QoL based on patient and caregiver characteristics, with caregiver burden as a mediator. [Methods] This study was conducted using surveys, a literature review, and interviews. Survey data were collected from 238 subjects, who were diagnosed with stroke, and their family caregivers from October 2013 to April 2014. [Results] Caregiver health status, income, spouses caring for patients, and duration of hospitalization were identified as significant predictors of caregivers’ QoL with a mediating effect of caregiver burden. The time spent on caregiving per day and patient education level were the only direct predictors of caregivers’ QoL. [Conclusion] The responsibility of caring for patients with stroke, in particular for a spouse, must be administered by means of a holistic family-centered rehabilitation program. In addition, financial support and availability of various health and social service programs must be comprehensively provided in order to maintain caregivers’ well-being.Key words: Caregivers, Stroke, Quality of life     

Testing a home-telehealth programme for US veterans recovering from stroke and their family caregivers

Purpose. The study purpose was to implement a stroke-specific, care coordination home telehealth (CCHT) programme for US veterans with stroke and their family caregivers.

Methods. In a non-randomized open trial using a mixed methods design, we tested the utility of a stroke-specific, home telehealth programme with 18 veterans and 14 caregivers for 14 days. Programme questions assessed physical impairment, depressive symptoms, and fall prevalence among veterans, and burden level among family caregivers. Nine veterans and six caregivers completed post-programme interviews exploring their experiences with telehealth.

Results. During the 14-day trial, 55% of the veterans screened positive for depression at least once, 36% of the caregivers had clinically significant burden, half of the veterans and caregivers reported post-stroke concerns, and 90% believed post-stroke contact from a care coordinator would have been helpful. In the interviews, seven veterans indicated they had fallen or almost fallen post-stroke. Themes centred on tailoring CCHT to individual needs, coordinating with support services, identifying safety issues, and providing information about stroke prevention.

Conclusions. Home telehealth offers innovative ways to target post-stroke rehabilitation programmes to the needs and concerns of patients and their caregivers, and should include regular real-time contact between stroke patients and their healthcare providers.     

Empowering older people with early dementia and family caregivers: a participatory action research study

BackgroundThe increase in the number of people suffering from dementia is of increasing global concern. A survey on the living conditions of the elderly in a Japanese rural community revealed a high prevalence of early dementia and the necessity for interventions not only for the elderly with early dementia but also for their families.ObjectiveTo describe the implementation and process evaluation of a programme based on cognitive rehabilitation aimed at empowering the elderly with early dementia and education and counselling programmes aimed at likewise empowering their family caregivers.DesignThis study used a community health action research model. Participatory action research (PAR) was conducted through a cycle of planning, action, and reflection to identify effective interventions to empower participants with dementia (PsWD) and their caregivers.SettingA rural town in Japan.ParticipantsThis project involved 37 community-dwelling elderly with early or mild dementia and 31 family caregivers.MethodsA focus group interview was used for assessment. A monthly activity-based programme based on cognitive rehabilitation was developed to improve cognitive function. Three types of data were collected: observational data collected during the activities, written comments from the caregivers, the record of phone interviews and counsellings with caregivers. These data were compiled in chronological order into a portfolio for analysis. To empower family caregivers, educational and counselling programmes were offered.ResultsThe PAR lasted for 5 years and evolved over three cycles: individual, group and community. In the first cycle, the major focus of the intervention was to regain procedural skills for each PWD through a cooking programme. In the second cycle, to increase interactions with family members and with other PsWD, group activities that promoted communication among family members as well as among PsWD were implemented. The collective values and the beliefs of the PsWD's generation were validated by a series of trips to temples and shrines. In the third cycle, community participation was planned and implemented through culturally relevant sequential activities. PsWD demonstrated their expert skills and regained confidence. For family caregivers, the educational programme provided knowledge about dementia and utilization of social resources. Face-to-face and phone counsellings were offered as needed to coach problem-focused coping. These programmes helped to interpret the symptoms of dementia and to reduce the behavioural problems.ConclusionsCognitive rehabilitation theory was useful to restore lost procedural skills and regain confidence for PsWD. This PAR illustrated the importance of interventions for both community dwelling elderly with early dementia and their family caregivers.