Needs,priorities, and desired rehabilitation outcomes of family members of young adults who have had a stroke: findings from a phenomenological study

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.

     

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.

     

Relaxation training after stroke: potential to reduce anxiety

Abstract

Objective: To consider the feasibility of setting up a relaxation group to treat symptoms of post stroke anxiety in an in-patient post-acute setting; and to explore the effectiveness of relaxation training in reducing self-reported tension. Method: A relaxation group protocol was developed in consultation with a multidisciplinary team and a user group. Over a period of 24 months, 55 stroke patients attended group autogenic relaxation training on a rehabilitation ward. Attendance ranged between one and eleven sessions. Self-reported tension was assessed pre and post relaxation training using the Tension Rating Circles (TRCs). Results: The TRCs identified a significant reduction in self-reported tension from pre to post training, irrespective of the number of sessions attended; z?=??3.656, p?<?0.001, r?=??0.67, for those who attended multiple sessions, z?=??2.758, p?<?0.01, r?=??0.6 for those who attended a single session. Discussion: The routine use of relaxation techniques in treating anxiety in patients undergoing post-stroke rehabilitation shows potential. Self-reported tension decreased after attendance at relaxation training. The TRCs proved acceptable to group members, but should be validated against standard anxiety measures. Further exploration of the application of relaxation techniques in clinical practice is desirable.

• Implications for Rehabilitation

• Anxiety is prevalent after stroke and likely affects rehabilitation outcomes.

• Relaxation training is a well proven treatment for anxiety in the non-stroke population.

• A significant within session reduction in tension, a hallmark symptom of anxiety, was evidenced via group relaxation training delivered in a post-acute, in-patient stroke unit setting.

• Relaxation training a shows promise as a treatment for anxiety after stroke.

     

Barriers to implementation of stroke rehabilitation evidence: findings from a multi-site pilot project

Purpose: To describe the barriers to implementation of evidence-based recommendations (EBRs) for stroke rehabilitation experienced by nurses, occupational therapists, physical therapists, physicians and hospital managers. Methods: The Stroke Canada Optimization of Rehabilitation by Evidence project developed EBRs for arm and leg rehabilitation after stroke. Five Canadian stroke inpatient rehabilitation centers participated in a pilot implementation study. At each site, a clinician was identified as the “local facilitator” to promote the 6-month implementation. A research coordinator observed the process. Focus groups done at completion were analyzed thematically for barriers by two raters. Results: A total of 79 rehabilitation professionals (23 occupational therapists, 17 physical therapists, 23 nurses and 16 directors/managers) participated in 21 focus groups of three to six participants each. The most commonly noted barrier to implementation was lack of time followed by staffing issues, training/education, therapy selection and prioritization, equipment availability and team functioning/communication. There was variation in perceptions of barriers across stakeholders. Nurses noted more training and staffing issues and managers perceived fewer barriers than frontline clinicians. Conclusions: Rehabilitation guideline developers should prioritize evidence for implementation and employ user-friendly language. Guideline implementation strategies must be extremely time efficient. Organizational approaches may be required to overcome the barriers.

Implications for Rehabiliation

• Despite increasingly strong evidence for stroke rehabilitation, there are delays in implementation into clinical practice.

• This study showed that lack of time, staffing issues, staff education, therapy selection or prioritization, lack of equipment and team functioning were the main barriers to implementation.

• Managers and stakeholders should consider these barriers and prioritize evidence when implementing.

     

A day in the life of older people in a rehabilitation setting: an observational study

Abstract

Purpose: Nurses' contribution during inpatient rehabilitation is well documented. However, despite being the largest professional group in this setting, the specialty of rehabilitation nursing is poorly recognised. This article reports on the first of a four-phase study that aimed to clarify and develop the nursing contribution to inpatient rehabilitation for older persons. The aim of this study was to identify activity patterns and time use during daytime and evenings of older adult patients undergoing inpatient rehabilitation. Methods: Direct observation using behavioural modelling was undertaken of a convenience sample of 37 older people undergoing inpatient rehabilitation in a specialist unit of a large tertiary hospital in New Zealand. The primary outcome was the observation of meaningful activity. Binomial logistic regression was used to study the association between relevant variables. Findings: Meaningful activity was most likely to involve walking without assistance and to occur 08:00 to 14:00?h and 16:00 to 21:00?h during weekdays. Patients were more likely to receive treatment during the weekend. Irrespective of time, registered nurses were the health professionals most often present with patients. Conclusions: There is likely to be unrealised opportunities for registered nurses to support improved rehabilitation outcomes. Registered nurses' involvement in rehabilitation needs to be actively optimised.

• Implications for Rehabilitation

• Nurses' engagement with older adults in rehabilitation settings is likely to be substantial, placing them as key members of the rehabilitation team.

• Nurses make a pivotal contribution to inpatient rehabilitation based on specialised knowledge and skills but this contribution is not well understood.

• Opportunities are likely, at times when allied health professionals are less often present, e.g. evenings and weekends, for registered nurses to more intentionally overlap rehabilitation activities with other care requirements.

     

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.

     

Exploring patient and public involvement in stroke research: a qualitative study

Abstract

Purpose: To explore the experiences of patients and carers involved in patient and public involvement (PPI) activities for stroke research. Methods: Semi-structured interviews conducted with stroke survivors and carers (n?=?11) were analysed using thematic analysis. Results: Four key themes emerged: impact of PPI on the individual and the research process, credibility and expertise, level of involvement and barriers and facilitators to PPI for stroke survivors and carers. The perceived benefits to the research process included: asking questions, keeping researchers grounded and directing the research agenda. All participants drew upon their experiential expertise in their PPI role, but some also drew upon their professional expertise to provide additional credibility. Stroke survivors and carers can be involved in PPI at different levels of involvement simultaneously and the majority of participants wanted to be more involved. Barriers to involvement included: location, transport and stroke survivors capacity to concentrate and comprehend complex information. Facilitators included: reimbursement for travel and time and professionals effort to facilitate involvement. Conclusions: PPI in stroke research benefits stroke survivors and carers and is perceived to benefit the research process. The barriers and facilitators should be considered by professionals intending to engage stroke survivors and carers collaboratively in research.

• Implications for Rehabilitation

• This study has implications for PPI in stroke rehabilitation research, which could also be extrapolated to stroke rehabilitation service development and evaluation.

• Professionals facilitating PPI need to invest in developing supportive relationships in order to maintain ongoing involvement.

• Professionals need to be aware of how the varied consequences of stroke might impede participation and strategies to facilitate involvement for all who wish to be involved.

• For each rehabilitation issue being considered professionals need to decide: (1) how representative of the specific rehabilitation population the PPI members need to be, (2) whether experience alone is sufficient or whether additional professional skills are required and (3) whether training is likely to assist involvement or potentially reduce the lay representation.

     

Delivery of high quality stroke and vision care: experiences of UK services

Purpose: We sought to identify exemplars of high quality care provision from established stroke vision services. Methods: We identified areas of high quality services across the UK, judged as having integrated stroke/vision care provision for stroke survivors. Healthcare professionals were selected to participate in 1:1 interviews or focus groups. A strengths–weaknesses–opportunities–threats (SWOT) framework was used to lead the discussion in a semi-structured format. Thematic analysis was undertaken. Results: Interviewees (n?=?24) from 14 NHS Trusts included eye clinic managers, nurses, orthoptists, occupational therapists and physiotherapists. Identified strengths of their services included established communication, training provision for stroke team staff, “open access” for referrals, use of standardised screening/referral forms, provision of lay summaries and information sheets, patients assessed on the stroke unit with continued follow-up and initial visual assessments made within 1 week of stroke onset. Weaknesses included lack of funding, insufficient orthoptic cover, and time consuming retraining of stroke staff because of staff rotation and changes. Opportunities included increasing the number (or length) of orthoptic sessions and training of stroke staff. Perceived threats related to funding and increased appointment waiting times. Conclusions: Practical elements for improved stroke and vision care provision are highlighted which can be implemented with relatively little financial inputs.

• Implications for Rehabilitation

• Integrated vision services within stroke units can improve the detection of visual problems in stroke survivors leading to earlier visual rehabilitation.

• Orthoptists within core stroke teams are beneficial to the delivery of a high quality service.

• This study illustrates clear practical elements to support the provision of high quality integrated stroke and vision services. Relatively little financial inputs are required to fund such services but with larger potential to improve patient care.

     

Feasibility of a nursing rehabilitation guideline for patients with stroke: evaluating the use by nurses

Purpose: To determine the feasibility of the Clinical Nursing Rehabilitation Stroke-guideline (CNRS-guideline) in the care of stroke patients in terms of the experiences, views and attitudes of nurses towards the guideline and their adoption of the guideline and how often the recommendations were used.

Method: A four phase cross sectional design was used. Demographic data were collected from nurses (n=30) and patients (n=105). After each test phase the nurses received questionnaires about their experiences of the guideline including questions about their attitude towards the guideline and adoption of the guideline. Also, how often the recommendations were used was registered.

Results: The nurses’ general impression of the recommendations scored a median of 6.0. A majority of the nurses indicated that the aims of the guideline were clear, that it provided new insights into stroke care. Among the challenges experienced were lack of knowledge and skills and organizational difficulties. Half of the nurses adopted the guideline and the nurses’ attitude towards the guideline scored a median of 6.0.

Conclusion: The guideline provides nurses with an important means for evidence based care for patients with stroke. The guideline was feasible for nurses to use but various challenges need ongoing attention when planning implementation.

Implication for Rehabilitation

• The CNRGS-guideline was found to be feasible for nurses to use in the daily care of patients with stroke, but various challenges, need an ongoing attention.

• The CNRGS-guideline is an important step in the stimulation of quality improvement and efficiency and may result in better outcome and satisfaction of patients with stroke.

• The CNRGS-guideline provides nurses with an important means to provide evidence based care for patients with stroke.

     

What is rehabilitation potential? Development of a theoretical model through the accounts of healthcare professionals working in stroke rehabilitation services

Abstract

Introduction: Multi-disciplinary team members predict each patient’s rehabilitation potential to maximise best use of resources. A lack of underpinning theory about rehabilitation potential makes it difficult to apply this concept in clinical practice. This study theorises about rehabilitation potential drawing on everyday decision-making by Health Care Professionals (HCPs) working in stroke rehabilitation services. Methods: A clinical scenario, checked for face validity, was used in two focus groups to explore meaning and practice around rehabilitation potential. Participants were 12 HCPs working across the stroke pathway. Groups were co-facilitated, audio-recorded and fully transcribed. Analysis paid attention to data grounded in first-hand experience, convergence within and across groups and constructed a conceptual overview of HCPs’ judgements about rehabilitation potential. Results: Rehabilitation potential is predicted by observations of “carry-over” and functional gain and managed differently across recovery trajectories. HCPs’ responses to rehabilitation potential judgements include prioritising workload, working around the system and balancing optimism and realism. Impacts for patients are streaming of rehabilitation intensity, rationing access to rehabilitation and a shifting emphasis between management and active rehabilitation. For staff, the emotional burden of judging rehabilitation potential is significant. Current service organisation restricts opportunities for feedback on the accuracy of previous judgements. Conclusion: Patients should have the opportunity to demonstrate rehabilitation potential by participation in therapy. As therapy resources are limited and responses to therapy may be context-dependent, early decisions about a lack of potential should not limit longer-term opportunities for rehabilitation. Services should develop strategies to enhance the quality of judgements through feedback to HCPs of longer-term patient outcomes.

• Implications for Rehabilitation

• Rehabilitation potential is judged at the level of individual patients (rather than population-based predictive models of rehabilitation outcome), draws on different sources of often experiential knowledge, and may be less than reliable.

• Decisions about rehabilitation potential may have far reaching consequences for individual patients, including the withdrawal of active rehabilitation in hospital or in the community and eventual care placement.

• A better understanding of what people mean by rehabilitation potential by all team members, and by patients and carers, may improve the quality of joint decision making and communication.

     

Factors influencing the provision of oral hygiene care following stroke: an application of the Theory of Planned Behaviour

Objectives: This study aimed to examine “intention to” and “performance of” oral hygiene care to stroke patients using the Theory of Planned Behavior.

Materials and methods: A large scale survey of 13 centers in Malaysia was conducted involving 806 nurses in relation to oral hygiene care intentions and practices. In addition, information on personal and environmental factors was collected.

Results: The response rate was 95.6% (778/806). The domains of the Theory of Planned Behavior were significantly associated with general intention to perform oral hygiene care: attitudes (β?=?0.21, p?p?p?p?<0.01), controlling for other factors. Knowledge scores, training, access to oral hygiene guidelines and kits, as well as working ward type were identified as key factors associated with intention and practice of oral hygiene care.

Conclusion: The Theory of Planned Behavior provides understanding of “intention to” and “performance of” oral hygiene care to stroke patients. Several provider and environmental factors were also associated with intentions and practices. This has implications for understanding and improving the implementation of oral hygiene care in stroke rehabilitation.

• Implications for Rehabilitation

• Oral hygiene care is crucial for stroke patients as it can prevent oral health problems and potentially life threatening events (such as aspiration pneumonia).

• Despite oral hygiene care being relative simple to perform, it is often neglected during stroke rehabilitation.

• A large-scale national survey was conducted to understand “intentions to” and “performance of” oral hygiene care to stroke patients using the Theory of Planned Behavior social cognition model.

• These study findings may have implications and use in promoting oral hygiene care to stroke patients:i) by understanding the pathways and influences to perform oral hygiene care.ii) to conduct health promotion and health education based on behavioral models such as Theory of Planned Behavior.

     

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.

     

Experiences of using mobile phones in everyday life among persons with stroke and their families in Uganda – a qualitative study

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.

     

Lasting effect of an oral hygiene care program for patients with stroke during in-hospital rehabilitation: a randomized single-center clinical trial

Purpose: Because the oral hygiene is poorly prioritized in the immediate post-stroke period, we implemented an oral hygiene care program (OHCP) for stroke in-patients and evaluated its persistence after discharge.

Method: In all, 62 patients with stroke who were admitted to the rehabilitation ward were randomly assigned to two groups: 33 patients to the intervention group and 29 to the control group. The OHCP, including tooth brushing education and professional tooth cleaning, was administered to the intervention group twice a week six times during in-hospital rehabilitation. Oral health status was examined both at baseline and three months after discharge from the hospital. Oral hygiene status was examined at three- to four-day intervals five times during the hospitalization period.

Results: After OHCP, oral hygiene status including the plaque index, calculus index, and O’Leary plaque index improved significantly in the intervention group, compared to the control group (p?p?Conclusions: An OHCP conducted during in-hospital rehabilitation was effective in improving oral health and plaque control performance among patients with stroke, with effects still seen three months after discharge from the hospital.

• Implications for Rehabilitation

• Initial oral hygiene status and plaque control performance were poor in stroke patients who were in rehabilitation center.

• An oral hygiene care program during in-hospital rehabilitation was effective in improving oral hygiene status and plaque control performance among stroke patients at three months after discharge.

• Repeated tooth brushing education and professional tooth cleaning were necessary to improve plaque control performance of stroke patients.

     

Community re-integration and long-term need in the first five years after stroke: results from a national survey

Abstract

Purpose: Acute stroke care continues to improve but the later stroke recovery phase remains less well understood. The aim of this study was to document self-reported need in relation to stroke recovery and community re-integration among community-dwelling persons up to five years post-stroke. Methods: A national survey was carried out in Ireland. Participants were recruited through stroke advocacy organisations and health professionals. Existing validated questionnaires were adapted with permission. The final questionnaire assessed respondents’ perceptions of their community re-integration and on-going needs. Results: A total of 196 stroke survivors, aged 24–89 years responded. Over 75% of respondents reported experiencing mobility, emotional, fatigue and concentration difficulties post-stroke. Emotional problems and fatigue demonstrated the highest levels of unmet need. Families provided much support with 52% of people needing help with personal care post-stroke. Forty-two per cent of respondents in a relationship felt that it was significantly affected by their stroke. In addition, 60% of respondents reported negative financial change. Only 23% of those <66 years had worked since their stroke, while 60% of drivers returned to driving. Conclusions: Stroke had a personal, social and economic impact. Emotional distress and fatigue were common and satisfaction with the help available for these problems was poor.

• Implications for Rehabilitation

• Professionals should recognise that family members provide high levels of support post-stroke while dealing with changes to personal relationships.

• Emotional, concentration and fatigue problems post-stroke require recognition by health professionals.

• A greater focus on return-to-work as part of stroke rehabilitation may be of value for patients of working age.

     

Sexuality after stroke: patient counseling preferences

Abstract

Purpose: 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.