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2.
Purpose: This study describes a case formulation approach applying a prospective ICF derived clinical tool to assess rehabilitation needs for a community dwelling stroke survivor with care from an outpatient rehabilitation medicine clinic. Method: Case history data on the person were assessed for rehabilitation management planning using a prospective tool to interlink current with projected future functional status in everyday settings. Implicit assessment with reflective action informed decision points at each stage of the rehabilitation process. Results: As a result of reflective action using the prospective tool, rehabilitation management led to significant changes in client participation after limitations to mobility and self care were mapped to the living conditions of the stroke survivor. The context sensitive rehabilitative plan resulted in higher subjective health-related quality of life in the stroke survivor and significant other and enhanced their capacity for participation. Conclusions: Reflective action informed assessment applying ICF concepts to clinical problem solving resulted in positive gains in health-related quality of life in a stroke survivor. Implications for Rehabilitation Reflective inquiry about the use of The International Classification of Disability, Functioning and Health (ICF) enables extension of its applicability in clinical practice settings. An ICF-based tool is proposed to interlink the ICF and ICD in rehabilitation case management. A case study is used to highlight the use of an ICF-based tool in the context of rehabilitation medicine.
3.
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.
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4.
Purpose: Spinal cord injuries (SCI) are one of the most complex and disabling diseases, implying severe consequences on aspects of life of people affected by SCI and their caregivers. The aim of our study was to explore the situation of informal caregivers of persons with SCI when discharged home from a SCI Unit, in relation to needs, emotional experiences, difficulties and subsequent reactions to discharge. Methods: A purposive sample of 11 caregivers were interviewed on patients' discharge home from the Spinal Injury Care Unit and at 6 months. The semi-structured interviews were analyzed using a qualitative phenomenological methodology as described by Giorgi. Results: Five main themes emerged from the caregivers' experiences including their implicit and explicit needs. Problems concerning communication with healthcare professionals and the need for an adequate multidisciplinary taking charge of caregivers in order to support their new role emerged within all the themes. Conclusions: Results suggest that greater caregiver involvement in the rehabilitation process and their preparation for discharge are required. Communication with healthcare professionals needs to be enhanced. It would be useful to organize follow-up visits after discharge to assess intervention effectiveness. - Implications for Rehabilitation
Understanding the importance of discharge from the spinal cord unit as a meaningful step in the rehabilitation path for both patients and their informal caregivers. Orientating healthcare professionals towards a better caregiver involvement during the rehabilitation process. Promoting rehabilitation interventions addressed to the patients and their caregivers concerning supportive communication strategies as well as providing meaningful information, psychological and social support, educational intervention besides the physical aspects of care. Understanding SCI survivors caregivers' needs can assist healthcare professionals in planning and improving taking charge of this core aspect of nursing care.
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5.
AbstractPurpose: The aim was to better understand how information and communication technology (ICT) can provide support to elderly family caregivers caring for significant others suffering from dementia or stroke. Method: Ten households equipped with an ICT system, with a family caregiver and a spouse diagnosed with dementia or stroke, were followed and observed in a two-year case study. The family caregivers had regular meetings in groups organised by the municipal care of the elderly. Data from observations, semi-structured interviews, user data from the ICT system and data about the support provided by the municipality has been used to validate the findings. Results: The family caregivers socialised with users in the group as long as the users were stayed in the group. Meetings in the group were an important opportunity for exchanging experiences and to easing one”s mind. The ICT system did not reduce the municipality”s level of services to the participating families. The information built into the system has to be constantly updated to be of interest. Conclusions: An ICT support must be provided in a context of personal meetings and with a formal caregiver backing. This will empower informal or family caregivers. Such support must give the user the possibility to communicate and get access to the Internet. - Implications for Rehabilitation
Benefits were obtained when informal caregivers met with a group of people with whom they share the same kind of experiences and were supported by a formal caregiver. Informal caregivers need more attention and recognition. ICT systems can help but must be current and maintain the users interest.
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6.
Purpose: This study explored the experience of stroke from the perspective of family members of young adults who have had a stroke. Gaining understanding of the short, medium and long-term needs and desired rehabilitation outcomes of family members assisted identification of appropriate family-centred multidisciplinary rehabilitation interventions. Method: A qualitative approach based on Merleau-Ponty’s existential phenomenology enabled exploration of family members’ experience of stroke. Eleven family members, including parents, spouses, children and siblings, participated in 24 interviews over 2 years. A subsequent iterative process of critical reflection was used to identify family-centred needs, priorities and associated rehabilitation outcomes. Results: Within a thematic framework, family members’ experience was conceptualised as Disruption of Temporal Being. Against this overarching theme or (back)ground, figural themes were identified: Uncertainty, Disrupted and Altered Relationships, and Situatedness. In addition, sixteen short, medium and long-term effects of stroke were identified along with associated family-centred needs and rehabilitation outcomes. Conclusion: An empathetic understanding of the experience of stroke from the perspective of family members, combined with research evidence and professional expertise enables the multidisciplinary rehabilitation team to deliver tailored interventions based on identified needs and priorities, and negotiation of mutually agreed goals. Implications for Rehabilitation Following stroke in a young adult, families’ needs, priorities and associated rehabilitation outcomes change over time; rehabilitation services should reflect this dynamic process. To deliver family-centred care, rehabilitation professionals need to develop a deeper understanding of the experience of families affected by stroke, gained from qualitative research findings and from their own reflective practice. Gaining understanding of the experience of family members of young adults who have had a stroke will enable health professionals to consider how they may improve practice and enhance service provision to ensure delivery of effective, family-centred interventions. The table of family-centred needs and outcomes can be used by members of the multidisciplinary stroke rehabilitation team in conjunction with their own knowledge, experience and resources to inform family-centred practice.
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AbstractPurpose: Although acute stroke care has improved survival, many individuals report dissatisfaction with community reintegration after stroke. The aim of this qualitative meta-synthesis was to examine the barriers and facilitators of community reintegration in the first year after stroke from the perspective of people with stroke. Methods: A systematic literature search was conducted. Papers that used qualitative methods to explore the experiences of individuals with stroke around community reintegration in the first year after stroke were included. Two reviewers independently assessed the methodological quality of papers. Themes, concepts and interpretations were extracted from each study, compared and meta-synthesised. Results: From the 18 included qualitative studies four themes related to community reintegration in the first year after stroke were identified: (i) the primary effects of stroke, (ii) personal factors, (iii) social factors and (iv) relationships with professionals. Conclusions: This review suggests that an individual’s perseverance, adaptability and ability to overcome emotional challenges can facilitate reintegration into the community despite persisting effects of their stroke. Appropriate support from family, friends, the broader community and healthcare professionals is important. Therapeutic activities should relate to meaningful activities and should be tailored to the individual stroke survivor. - Implications for Rehabilitation:
Stroke survivors feel that rehabilitation in familiar environments and therapeutic activities that reflect real-life could help their community re-integration. In addition to the physical sequelae of stroke, emotional consequences of stroke should be addressed during rehabilitation. Healthcare professionals can provide clear and locally relevant advice to facilitate aspects of community reintegration, including the return to driving and work.
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8.
AbstractPurpose: 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.
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9.
Objectives: Identify factors of informal caregivers, caregiving, and people with multiple sclerosis (MS) receiving assistance that are associated with perceptions of caregiver accomplishment. Methods: National data were collected in a telephone interview survey of 530 informal caregivers and analyzed using an ordered logistic regression model to identify factors associated with perceptions of caregiver accomplishment among 442 of these informal caregivers (caregivers providing all data in their survey responses needed for the regression model). Results: We found that age of the person with MS and duration of caregiving measured by the number of hours per week the caregiver assisted the person with MS were significantly linked to positive perceptions of accomplishment. Conversely, the caregiver’s perception that assisting the person with MS was emotionally draining, a spousal relationship, and caregiver education levels were significantly associated with negative perceptions of accomplishment. Conclusions: Health professionals treating people with MS and their caregivers should be sensitive to the impact caregiving has on the emotional needs of caregivers and to the unique support needs of spousal caregivers. Health practitioners also should be sensitive to the variety of benefit-finding themes expressed by caregivers to facilitate the caregivers’ efforts to discover gains in their experiences assisting people with MS, such as perceptions that caregiving provides a sense of accomplishment. Implications for Rehabilitation Assistance from informal caregivers enables people with multiple sclerosis to remain in their homes as their functional dependence becomes more permanent and their need for personal assistance increases. Caregiver perceptions that assisting the person with multiple sclerosis was emotionally draining and a spousal relationship were significantly associated with negative perceptions of accomplishment. Health professionals who treat informal caregivers, as well as health professionals treating people with multiple sclerosis, should be sensitive to the impact care giving has on the emotional health of caregivers, especially spousal caregivers.
10.
Aim The aim of this study was to describe the experiences and meaning of using mobile phones in everyday life after stroke, among persons with stroke and their family members. Methods Qualitative semi-structured interviews were conducted among 11 persons with stroke and 9 family members 2 months to 2 years after the stroke. The interviews were analysed by using constant comparative grounded theory (GT) approach. Results Seven categories were identified from the analysis of the participants’ experiences. The mobile phone: (1) as an enabler of communication and connections with other people, (2) a source of inspiration for agency, (3) structuring routine and activities in daily life, (4) as a facilitator of social and economic wellbeing of an individual or family, (5) promoter of belonging and participation in social relationships, (6) facilitator of reintegration to community living and (7) enabler of family members to feel secure. From these categories, a core category emerged: The mobile phone as a “life line” and an extension of the body enabling connection, belonging and agency to act in a complex everyday life situation. Conclusion The study gives support for the possibility of using mobile phones to facilitate change and community integration in the rehabilitation process after stroke. - Implications for Rehabilitation
Stroke leads to decreased functioning in everyday life due to impairments, activity limitations and participation restrictions as well caregiver burden. Mobile phones seem to be an accessible and affordable technology used in daily life of persons with stroke and family members and connects them to the needed services and social relationships. The mobile phone technology reduces resource and infrastructural challenges and increases accessibility to rehabilitation interventions. The mobile phone was an important instrument that facilitated the quality of life of persons with stroke and their family members and could increase their participation in rehabilitation interventions.
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11.
Purpose: To describe patient perspectives of aerobic exercise during inpatient stroke rehabilitation, including their self-efficacy and beliefs towards exercise, as well as their perceptions of barriers. Method: A survey was conducted at three Canadian rehabilitation centres to evaluate individuals’ ( N?=?33) self-efficacy and outcome expectations for exercise. In addition, patient perceptions of other people recovering from stroke, social support, and aerobic exercise as part of rehabilitation were assessed. Results: Thirty-two people completed the survey. Of these, 97% were willing to participate in aerobic exercise 5.9?±?8.8 days after admission to inpatient rehabilitation. While outcome expectations for exercise were high, participants reported lower self-efficacy for exercise. Patients reported barriers related to the ability to perform exercise (other health problems (i.e., arthritis), not being able to follow instructions and physical impairments) more often than safety concerns (fear of falling). The lack of support from a spouse and family were commonly identified, as was a lack of information on how to perform aerobic exercise. Conclusion: Patients with stroke are willing to participate in aerobic exercise within a week after admission to inpatient rehabilitation. However, they perceive a lack of ability to perform aerobic exercise, social support from family and information as barriers. - Implications for rehabilitation
Aerobic exercise is recognized as part of comprehensive stroke rehabilitation. There is a need to better understand patient perspectives to develop and implement more effective interventions early after stroke. Patients lack confidence in their ability to overcome barriers early after stroke. Patients are concerned with their ability to perform exercise, fall risk, lack of support from a spouse and family, and limited information on aerobic exercise. There is a need to reinforce education with practical experience in structured aerobic exercise programs that show patients and caregivers how to manage disability and complex health needs.
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14.
AbstractPurpose: Sexual dysfunction is common after stroke, but is frequently not addressed by healthcare providers. The aim of this study was to examine patient preferences for counseling related to sexuality post-stroke. Method: Two hundred and sixty-eight patients from a stroke registry were provided an anonymous paper or online survey. Thirty-eight patients responded and completed the survey. The survey included demographic information, and scales of sexual dysfunction, fatigue, depression and functional independence. In addition, we queried subjects about stroke-related sexual dysfunction and their preferences for counseling and education materials. Results: Most respondents (71%) identified sexuality as a moderately to very important issue in their post-stroke rehabilitation. Sexual dysfunction was common, with 47% of respondents indicating that their sexual function had declined since the stroke. Eighty-one percent reported receiving insufficient information about sexuality post-stroke, and the majority (60%) expressed a preference for receiving counseling regarding sexuality from a physician. A substantial portion (26.5%) of patients wanted to receive counseling prior to discharge from a hospital or rehabilitation center, with 71% wishing to receive counseling within 1 year post-stroke. Conclusions: Many stroke survivors experience sexual dysfunction and indicate a desire for additional information and counseling from healthcare providers. Preferences regarding the timing of such counseling vary, creating challenges for optimizing the delivery of this care. - Implications for Stroke Rehabilitation
Sexual dysfunction is common after stroke, but is frequently not addressed by healthcare providers. Many stroke survivors experience sexual dysfunction and indicate a desire for additional information and counseling from healthcare providers. Most stroke survivors identify sexuality as an important issue in their post-stroke rehabilitation. Exploring individual stroke survivor counseling preferences periodically over the course of recovery may be a useful strategy for delivering the desired information at the most appropriate time.
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15.
AbstractPurpose: 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.
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17.
Purpose: This study aimed to provide an understanding of the lived experience of rehabilitation in adults with traumatic brain injury (TBI) from hospital discharge up to four years post-injury. Materials and methods: We used a qualitative explorative design with semi-structured in-depth interviews. Twenty participants with TBI were included from a level I Trauma Center in Denmark at 1–4 years post-injury. Qualitative thematic analysis was applied for data analysis. Results: Three main themes emerged during analysis: A new life, Family involvement, and Rehabilitation impediments. These themes and their sub-themes described the patient perspective of TBI and rehabilitation post hospitalization. Participants reassessed their values and found a new life after TBI. Family caregivers negotiated rehabilitation services and helped the participant to overcome barriers to rehabilitation. Although participants were entitled to TBI rehabilitation, they had to fight for the services they were entitled to. Conclusion: Individuals with TBI found ways of coping after injury and created a meaningful life. Barriers to TBI rehabilitation were overcome with help from family caregivers rather than health care professionals. Future studies need to find ways to ease the burden on family caregivers and pave the way for more accessible rehabilitation in this vulnerable group of patients. - Implications for rehabilitation
TBI rehabilitation might benefit from: ??Increased transparency in rehabilitation options ??More systematic follow-up programs ??Age-appropriate rehabilitation facilities ??Inclusion of patient and family in the planning of long-term rehabilitation
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18.
Purpose: To evaluate the predictive capacity of caregiver availability on functional ability at time of discharge from inpatient rehabilitation in individuals with severe first-time stroke. Methods: A retrospective chart review was conducted of severe stroke inpatients admitted to a stroke rehabilitation unit between April 2005 and December 2009. Follow-up telephone interviews were conducted with patients to determine caregiver availability at time of discharge. Hierarchical linear regression analysis was performed to assess the predictive capacity of caregiver availability on functional ability at discharge from an inpatient rehabilitation unit after controlling for covariates. Results: Data from 180 individuals were included in the analysis. Individuals with a caregiver had significantly higher levels of functional ability at discharge compared to those without (85.8?±?23.6 versus 72.9?±?20.3; p?F (5,174)?=?26.21, p? Conclusions: The presence of a caregiver at time of discharge from inpatient rehabilitation is predictive of significantly higher functional ability at discharge in individuals with severe stroke. - Implications for rehabilitation
The availability of a caregiver at time of discharge from inpatient rehabilitation is predictive of improved functional ability at discharge in individuals with severe stroke. The presence of an available caregiver positively influences the functional recovery of individuals with severe stroke and may be an important element to successful rehabilitation.
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19.
Objective: This study examined the connections between family dynamics and the mental health of caregivers of youth with spinal cord injuries/disorders (SCI/D) caregivers from Colombia, South America. It was hypothesized that lower family functioning would be associated with poorer caregiver mental health. Methods: A cross-sectional study of self-report data collected from caregivers through the Hospital Universatario Hernando Moncaleano Perdomo in Neiva, Colombia. Thirty caregivers of children with SCI/D from Nevia, Colombia who were a primary caregiver for ≥3 months, providing care for an individual who was ≥6 months post-injury/diagnosis, familiar with the patient’s history, and without neurological or psychiatric conditions. Caregivers’ average age was 41.30 years (SD?=?10.98), and 90% were female. Caregivers completed Spanish versions of instruments assessing their own mental health and family dynamics. Results: Family dynamics explained 43.2% of the variance in caregiver burden and 50.1% of the variance in satisfaction with life, although family dynamics were not significantly associated with caregiver depression in the overall analysis. Family satisfaction was the only family dynamics variable to yield a significant unique association with any index of caregiver mental health (satisfaction with life). Conclusions: If similar findings emerge in future intervention research, interventions for pediatric SCI/D caregivers in Colombia and other similar global regions could benefit from including techniques to improve family dynamics, especially family satisfaction, given the strong potentially reciprocal connection between these dynamics and caregiver mental health. - Implications of Rehabilitation
The degree of disability resulting from SCI/D can vary greatly depending on the severity and level of the lesion, though permanent impairment is often present that profoundly impacts both physical and psychological functioning. Very little is known about the impact of pediatric SCI/D in developing countries, despite the high rates of injury reported in these areas. Family interventions could contribute significantly to the lives of children with SCI/D and their families.
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20.
AbstractPurpose: Nurses represent the largest professional group working with stroke-survivors, but there is limited evidence regarding nurses’ involvement in post-stroke rehabilitation. The purpose of this study was to identify and explore the perspectives of nurses and other multidisciplinary stroke team members on nurses’ practice in stroke rehabilitation. Method: Q-methodological study with 63 multidisciplinary stroke unit team members and semi-structured interviews with 27 stroke unit team members. Results: Irrespective of their professional backgrounds, participants shared the view that nurses can make an active contribution to stroke rehabilitation and integrate rehabilitation principles in routine practice. Training in stroke rehabilitation skills was viewed as fundamental to effective stroke care, but nurses do not routinely receive such training. The view that integrating rehabilitation techniques can only occur when nursing staffing levels were high was rejected. There was also little support for the view that nurses are uniquely placed to co-ordinate care, or that nurses have an independent rehabilitation role. Conclusions: The contribution that nurses with stroke rehabilitation skills can make to effective stroke care was understood. However, realising the potential of nurses as full partners in stroke rehabilitation is unlikely to occur without introduction of structured competency-based multidisciplinary training in rehabilitation skills. - Implications for Rehabilitation
Multidisciplinary rehabilitation in stroke units is a cornerstone of effective stroke care. Views of stroke unit team members on nurses’ involvement in rehabilitation have not been reported previously. Nurses can routinely incorporate rehabilitation principles in their care. Specialist competency-based stroke rehabilitation training needs to be provided for nurses as well as for allied health professionals.
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