A stroke can be a devastating event that often results in long-lasting disability and reduced quality of life (Feigin et al., 2017; Virani et al., 2020). Worldwide, stroke remains one of the leading causes of disability (Feigin et al., 2017; Virani et al., 2020), leaving many stroke survivors with long-term limitations that can affect activities of daily living. Although data suggest the incidence and mortality rates of stroke are on the decline (Feigin et al., 2017), stroke still continues to significantly affect a large portion of the population, with approximately 795,000 Americans experiencing a new or recurrent stroke every year (Bright et al., 2015). It is projected that, by 2030, 3.4 million additional adults in the United States will be diagnosed with stroke, which accounts for 3.9% of the entire adult population (Virani et al., 2020).
The decline in incidence of stroke mortality has resulted in an increase in the number of people disabled from or affected by stroke (Feigin et al., 2017). Rehabilitation beginning in the acute stage of recovery improves the long-term outcomes of stroke survivors. Conversely, physical inactivity is associated with an increased risk for mortality and long-term disability (Lackland et al., 2014; MacDonald et al., 2013). Thus, promoting engagement in inpatient rehabilitation activities, particularly physical activities, is essential to enhance recovery and improve quality of life among stroke survivors.
Engagement has been defined as "the act of beginning and carrying on an activity with a sense of emotional involvement or commitment and the deliberate application of effort" (Lequerica & Kortte, 2010, p. 416). Patient engagement has been found to be a process in addition to an internal state, and it can be influenced by many different factors, especially the patient-provider relationship (Bright et al., 2015). Interventions designed to increase activation and participation through engagement have been associated with improvements in functional outcomes during inpatient rehabilitation (Bright et al., 2015). Nurses are in an optimal position to develop and implement interventions designed to increase engagement in stroke patients. In spite of current knowledge of the benefits of stroke rehabilitation participation, it is essential to better understand the barriers and facilitators to patient engagement in order to guide interventions and future research.
This integrative review synthesized the current research evidence on facilitators and barriers to engagement in rehabilitation and interventions for stroke survivors. Findings will inform the design of nursing interventions to increase patient engagement and participation in rehabilitation.
Methods
Whittemore and Knafl's (2005) process was used to inform the identification and selection of articles for this study. In collaboration with a health sciences librarian, a literature search was conducted in APA PsycInfo (EBSCO), the Cumulative Index to Nursing and Allied Health Literature (CINAHL), Pubmed/MEDLINE (National Library of Medicine), and Google Scholar. A preliminary search using controlled vocabulary and multiple search terms was first completed to identify search term combinations that would yield applicable results. The final key terms used included stroke, rehabilitation, hospitalization, therapy, barriers, obstacles, challenges, difficulties, issues, and problems. Controlled vocabulary and text search terms were used individually and in combination by combining the terms with "AND" and "OR." The use of these broad search terms produced the greatest number of potential articles to review. The results were narrowed to English language, peer-reviewed journals, and research studies published between 2010 and 2020. Hand and ancestry searching was performed by reviewing relevant studies cited by the resulting articles to confirm that a thorough search was conducted. The screening of titles, abstracts, and full-text articles was conducted by the first author, with guidance provided by the second and third authors. Following the initial search, an updated literature search was conducted on March 12, 2021, by the first author and health sciences librarian to identify potential missing and newly published articles. During this search, additional search terms were added, including facilitators, engagement, and goal setting. Following the same methods as in the previous search, results of this search yielded seven additional studies that were included in the overall study totals.
Study Selection
To be included in the review, publications were studies that included adult stroke patients in the inpatient acute care or rehabilitation setting. Studies had to report barriers and/or facilitators to rehabilitation or studies that tested interventions to increase engagement in rehabilitation. Publications were excluded if stroke survivors did not experience stroke rehabilitation or if publications were not available in English. Commentaries, editorials, dissertations, and opinion pieces were excluded.
Search Results
The database searches yielded 1,556 studies (see Figure 1). An additional four records were identified during a computerized search using Google Scholar, resulting in a total of 1,560 records being retained for review. Identified records were moved into EndNote for screening. Next, title and abstract of the remaining studies were screened for inclusion. During this process, a systematic review by MacDonald et al. (2013) was identified that included a similar research question. This systematic review primarily included articles published during and prior to 2010. Therefore, included articles in this review were limited to publications after 2010 in order to expand on our knowledge of the barriers and facilitators to inpatient rehabilitation engagement. This process left 70 articles eligible for full-text review. Following full-text article review, 25 articles were included in this integrative review. The majority of the articles excluded were because they lacked specificity to the stroke patient population or did not include barriers or facilitators to inpatient rehabilitation.
Data Extraction, Representation, and Analysis
Data extraction and synthesis were completed using the matrix method (Garrard, 2017). Data were categorized according to author(s), design, method, sample, setting, findings and conclusions, quality rating, and limitations (see Supplemental Digital Content, Table, http://links.lww.com/RNJ/A24). This review expands on the article by MacDonald et al. (2013) in multiple ways. First, the most recent article included in the MacDonald et al. (2013) review was published in 2011. Second, the 25 more recent articles included in this review allowed for identification of additional themes, and third, the included articles in this review more closely focused on engagement of patients in rehabilitation.
Results
Overview of Studies
During the data analysis phase, patterns and themes were identified, and a list of barriers, facilitators, and associated factors was created (see Table 1). Using the Johns Hopkins Nursing Evidence-Based Practice (JHNEBP) evidence level and quality guides (Dang & Dearholt, 2018), the level of evidence of the included studies was determined to range from Level 1 to Level 3, with Level 1 being the highest level of evidence out of five total levels (see Supplemental Digital Content, Table, http://links.lww.com/RNJ/A24). The overall quality of the studies was good. The JHNEBP model is an evidence-based practice guide designed specifically for nurses. It guides nurses through the process of discovering and evaluating quality evidence that can be implemented into nursing practice and patient care (Dang & Dearholt, 2018).
Four common themes related to barriers and facilitators to engagement in rehabilitation emerged from the literature. The first identified theme, stroke impact, was categorized as a barrier to engagement in rehabilitation. The remaining three themes, self-efficacy, therapeutic relationship, and motivating factors, are facilitators to engagement. These four themes are described in further detail below, followed by the interventions found to increase engagement and improve the stroke recovery process.
Barriers to Engagement in Rehabilitation
Stroke impact was the most significant barrier to rehabilitation engagement among stroke survivors. The term stroke impact includes the physical, psychosocial, and emotional impact of stroke. Stroke impact has the potential to significantly affect a patient's level of engagement in rehabilitation as described.
Stroke Impact
Some of the most common factors found to be associated with the impact of stroke on survivors included depression (Gillard et al., 2015; Last et al., 2021; Matsuzaki et al., 2015), spasticity (Gillard et al., 2015), communication difficulties (Kitson et al., 2013; Ryan et al., 2017), physical impairments (Kitson et al., 2013; Last et al., 2021; Lindvall et al., 2016; Ryan et al., 2017; Sheffler et al., 2012; Yeung et al., 2011), urinary incontinence (Kohler et al., 2018), cognitive deficits and lack of concentration (Lindvall et al., 2016; Meadmore et al., 2019), apathy (Matsuzaki et al., 2015), and visual deficits (Smith et al., 2018). The physical impact of stroke was often associated with a psychosocial and emotional impact (Meadmore et al., 2019), including feelings of humiliation (Kitson et al., 2013; Kohler et al., 2018), guilt (Yeung et al., 2011), lack of dignity and confidence (Kitson et al., 2013), and distress (Kitson et al., 2013).
Facilitators to Engagement in Stroke Rehabilitation
Self-efficacy, therapeutic relationship, and motivating factors were all identified as facilitators to stroke rehabilitation engagement. The facilitators and factors associated with each of these three themes are described in detail.
Self-Efficacy
The theme self-efficacy includes self-management and self-awareness. Self-efficacy, self-management, and self-awareness have all been found to improve recovery and poststroke outcomes in stroke patients (Kersey et al., 2019; Lindvall et al., 2016; Nicholson et al., 2014; Wolf et al., 2016). Some of the most common factors contributing to a decrease in self-efficacy are physical impairments (Lindvall et al., 2016) and lack of ability to concentrate (Sadler et al., 2017). Self-management programs are designed to help individuals learn to live with their current condition and increase their ability and motivation to participate in activities of daily living and other desired activities. One study found that stroke patients were not familiar with the term self-management and did not understand how it would affect their care (Sadler et al., 2017). Despite their lack of familiarity with the term, self-management programs have been found to potentially benefit stroke survivors and their recovery; however, the best format for delivery is yet to be discovered (Wolf et al., 2016).
Therapeutic Relationship
Three studies found that therapeutic relationships with healthcare providers have the ability to influence patient engagement in rehabilitation and successful patient goal setting (Bright et al., 2018; Kitson et al., 2013). Although therapeutic relationships have been shown to be beneficial for patients, not all patients have positive experiences with their healthcare providers. Stroke patients also have experienced challenges with effective communication and receiving support, holistic care, and information from their providers in a timely manner (Meadmore et al., 2019; Yeung et al., 2011). Adequate support and optimal care are essential for putting patients in good position to become engaged in rehabilitation.
Motivating Factors
Motivating factors include knowledge, beliefs, and education. Personal motivators, such as the desire to resume normal daily activities, positively affect patient engagement (Last et al., 2021). Support from peers, family, and rehabilitation staff increases motivation and willingness to participate in rehabilitation (Last et al., 2021). There are also negative factors that reduce motivation in stroke patients. Some patients and family members experience challenges receiving healthcare information in the inpatient setting (Ryan et al., 2017), along with education and support during the discharge process (Nicholson et al., 2014; Ryan et al., 2017). Others in the inpatient setting may experience setbacks and are at risk for readmission because of preexisting addictions and behaviors that were not addressed while hospitalized (Parikh et al., 2018).
It is important for healthcare providers to examine what factors contribute to the lack of motivation in patients. For some patients, it is related to their inability to identify the link between exercise and recovery or stroke risk (Simpson et al., 2011). One motivator for physical activity in stroke survivors is their beliefs of the benefits of exercise and the necessity of routine behaviors (Nicholson et al., 2014). For these patients, the importance of returning to their baseline level of function may drive their willingness to engage in rehabilitation activities.
Interventions
Barriers and facilitators to patient engagement in rehabilitation are important to consider when designing individualized patient care programs for enhanced recovery in stroke survivors. Individualized patient care is a key component in the recovery process that allows for the therapeutic relationship to occur between the patient and the nurse. This relationship provides the opportunity for the nurse to coach, encourage, and help the patient to adjust to daily life. Knowledge of known barriers and facilitators can lead to the development of targeted interventions for increasing engagement and improving patient outcomes. Therapeutic interventions designed and implemented by nurses and other healthcare professionals are successful at decreasing some of the negative symptoms experienced by stroke survivors during the rehabilitation and recovery period.
Individualized patient-centered goal setting was a commonly studied intervention found to successfully increase engagement. When individualized patient-centered goal setting was part of their care, stroke survivors had a positive experience in the inpatient setting (Kitson et al., 2013). The positive factors impacting goal setting were effective communication, individualized patient-centered plans, linking purpose of treatment to patients' personal goals, noticeable progress forward and improvements in physical function, support and encouragement, adequate resources, and goal-setting education for patients and families (Berg et al., 2016; Brown et al., 2014; Chang et al., 2020; Horton et al., 2011; Levack et al., 2011). Short-term conservative goals with an orientation toward physical functioning are preferred by stroke survivors (Levack et al., 2011). It has been found, however, that even when patient-centered goal setting is a part of care, factors have been identified that negatively influence its effectiveness. Some of the negative contributing factors include differing patient and staff expectations, the severity of stroke-related impairments, insufficient time, and financial and organizational pressures (Brown et al., 2014; Levack et al., 2011).
Additional interventions aimed at increasing patient engagement were discovered. One study found that game-like nurse-led movement interventions for stroke patients with hemiparesis were effective at improving functional status and reducing fatigue and depression (Kim, 2012). Motivational interviewing during stroke recovery may have a positive effect on mood and depression; however, the data are inconsistent (Cheng et al., 2015). An additional potentially successful intervention is basic body awareness therapy. This type of therapy uses targeted movements to challenge participants to focus on their body movements, along with what is experienced in those movements. Through basic body awareness therapy, postural control, balance, and gait are enhanced (Lindvall et al., 2016).
Discussion
During the rehabilitation process, nurses and healthcare workers play a significant role in encouraging and engaging stroke survivors. The goal of the recovery process is for patients to be involved in their own care and to achieve optimal function, which has the potential to reduce disability and improve quality of life. Nursing care should incorporate interventions designed to increase patient engagement; however, little research has been done to specifically measure engagement in stroke patients. In order for interventions to be developed to increase patient engagement, it is important to recognize the barriers and facilitators experienced during stroke recovery.
The four common themes related to barriers and facilitators to engagement in stroke rehabilitation identified in this review highlight many of the significant symptoms and stroke-related factors experienced by stroke survivors. The physical, psychosocial, and emotional impact of stroke can be significant in this population, making the road to recovery a challenging experience. Through the identification of facilitators to engagement in stroke rehabilitation, such as self-efficacy, therapeutic relationships, and motivation, patient care and interventions can be better designed and implemented to improve this recovery process and increase engagement. The most effective strategies appear to be those that are patient centered, therapeutic, focused on increasing patient involvement in their own care and goal setting, and aimed at helping patients achieve symptom management and a reduction in disability effect. Implementing these strategies may put patients in a better position to be successful upon discharge to home and reduce the risk for readmission related to preventable causes.
MacDonald et al. (2013) identified the following themes in their systematic review: goal setting, therapeutic connection, personalized rehabilitation, paternalism versus independence, patient-centered practice, knowledge is power, and feedback and achievement. This integrative review expands these findings by illustrating the importance of self-efficacy and stroke impact on patient engagement in inpatient rehabilitation. Although some of the themes identified in the MacDonald et al. (2013) review were also discovered in this review, others were not. This could be due to the use of different search terms and inclusion criteria by the authors. This review also limited inclusion of research studies to those following the most recent article included in the MacDonald et al. (2013) review.
When considering the findings of this review, it is important to recognize the variety in methodologies of the studies. The majority of the studies were qualitative. With engagement being difficult to measure, the qualitative design appears to be an appropriate means to study the experiences of stroke survivors receiving rehabilitative care. In addition to qualitative studies, there was a wide range of study designs incorporated into the review, including observational, longitudinal, secondary analyses, pretest and posttest, retrospective, and randomized controlled trials. Despite the variety in study designs, themes were able to be identified from the studies, resulting in recommendations for nursing practice.
Using the JHNEBP evidence level and quality guides, the level of evidence of the included studies ranged from Level 1 to Level 3 out of five total levels. The levels of evidence are categorized by study type, with Level 1 being the highest level of evidence. The overall quality of studies included was good, with few studies being rated high and one study demonstrating low quality. Based on the JHNEBP evidence level and quality guides, quality is defined differently for quantitative and qualitative studies. Overall, studies with consistent, generalizable results, sufficient sample sizes, consistent recommendations, definitive conclusions, and good supporting literature are rated from good to high, whereas those with design flaws and little evidence with inconsistent results receive a rating of low (Dang & Dearholt, 2018).
To objectively measure patient engagement, reliable and valid measures are needed. With these tools, well-structured experimental studies can be conducted to determine the effectiveness of nurse-led interventions aimed at increasing patient engagement. Without these tools, researchers will be unable to produce studies with high levels of evidence. A strong research focus should be on developing tools to measure engagement in the stroke patient population and nursing interventions to increase patient engagement. As a result, the cost savings of these interventions can be calculated, resulting in potential incentives for institutions with inpatient stroke rehabilitative services.
This review does have limitations. First, the number of included studies that specifically measure or study engagement is minimal. Second, this review was limited to studies involving adult participants and those published in English. Third, there was a wide range of study designs included, and the overall level of evidence was moderate. The incorporation of a variety of study designs, however, can also be considered a strength of this review. Fourth, the phase of stroke recovery varied across studies, making it difficult to generalize the findings to all stroke populations. Fifth, although multiple databases were used and an updated search was conducted, there remains a potential for articles to be missed that would strengthen the results of this review.
Despite the limitations, this review identifies the importance of engaging stroke survivors in their rehabilitation process in order to improve their satisfaction in care and reduce the stroke impact. With stroke being a leading cause of disability, it is crucial for nurses to be involved in the rehabilitation process to help facilitate a more efficient recovery (Feigin et al., 2017). Through the identification of patient engagement measures and nursing interventions designed to increase engagement, the ability of nurses to significantly impact the stroke recovery process will be better defined.
Key Practice Points
* Rehabilitation nurses can use the identified barriers and facilitators from this review to develop, revise, and implement interventions designed to improve the stroke recovery process of patients.
* By engaging stroke survivors in the rehabilitation process, nurses can help create a patient-centered approach, which may enhance their recovery in the inpatient setting and at home.
* Through the identification of patient engagement measures, rehabilitation nurses can measure the effectiveness of their interventions aimed at increasing engagement in rehabilitation among stroke survivors.
Conflict of Interests
The authors declare no conflicts of interest.
Funding
None.
References