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. Author manuscript; available in PMC: 2020 Nov 1.
Published in final edited form as: Rehabil Nurs. 2019 Nov-Dec;44(6):349–357. doi: 10.1097/rnj.0000000000000197

Family-Centered Care During Constraint-Induced Therapy after Chronic Stroke: A Feasibility Study

Sarah Blanton 1, Deborah Cussen Scheibe 2, Ashley Holmes Rutledge 3, Bridget Regan 4, Colleen Schwartz O’Sullivan 5, Pat C Clark 6
PMCID: PMC6675656  NIHMSID: NIHMS1030264  PMID: 31688561

Introduction

Stroke is a leading cause of adult disability (Benjamin et al., 2017) and creates significant societal and familial strain. Because informal caregivers are an integral part of a stroke survivor’s rehabilitation, the term “carepartner” is used to describe the collaborative relationship of the family member and stroke survivor during recovery, emphasizing the active role of the family member as a partner in working with the stroke survivor in recovery (Blanton et al., 2016). Carepartners’ (CPs) involvement can facilitate stroke recovery; but also may result in negative CP psychological outcomes (Clark et al., 2004; Haley et al., 2009). In a study evaluating CPs of stroke survivors receiving a specialized arm rehabilitation intervention, Clark and colleagues (Clark et al., 2015) found CPs reported difficulty knowing how much to “push” their loved one to perform therapy exercises, identifying that their efforts to promote adherence to prescribed therapeutic activities was a source of family conflict. Teaching CPs how to provide positive support may help reduce conflict and improve outcomes for both CP and stroke survivors, providing a more holistic approach to stroke rehabilitation. As noted from nursing research literature on caregiving after stroke, the use of active strategies for CPs to facilitate problem solving with the stroke survivor (Grant, Elliott, Weaver, Bartolucci, & Giger, 2002; G. C. Smith, Egbert, Dellman-Jenkins, Nanna, & Palmieri, 2012) and skill building (Bakas et al., 2014; Bakas et al., 2009) have been shown to improve health related quality of life and reduce burden in contrast to simply offering passive information alone (J. Smith et al., 2008). Being at the forefront of helping families understand recovery after stroke, rehabilitation nurses have the opportunity to facilitate CP participation in stroke survivor recovery by supporting evidence-based strategies that engage the family in rehabilitation activities.

An example of a rehabilitation approach that requires carry-over into the home environment and would potentially benefit from family engagement, is constraint-induced movement therapy (S Blanton & Wolf, 1999). This therapy is one of the recommended functional task practice approaches noted in the American Heart Association/American Stroke Association Guidelines (Winstein et al., 2016) and involves stroke survivors wearing a mitt on the hand of the stronger upper-extremity to encourage use of the weaker limb during daily activities. A systematic review by Veerbeek and colleagues (Veerbeek et al., 2014) investigated constraint-induced movement therapy (CIMT) in 41 randomized clinical trials (N=1342, PEDro score range 2–8), showing clinically significant improvements in stroke survivor upper extremity function in early, late and chronic rehabilitation phases and persisting for at least two years. While effective, CIMT can also be demanding on the stroke survivor and family members and may benefit from positive engagement of the CP during stroke survivor therapeutic activities to improve upper extremity function.

While evidence described above supports the importance of addressing CP needs, research targeting CPs frequently involves broad approaches to care and limited evidence exists to guide the collaboration of the CP in specific rehabilitation therapies. This paper describes the feasibility testing of an intervention we developed - CARE-CITE (Carepartners and Constraint-Induced Movement Therapy) - based on Self-Determination Theory (Ryan & Deci, 2000) designed to engage the CP in a mutually supportive environment with the stroke survivor during the delivery of CIMT. Interventions that promote an autonomy supportive environment (characterized by empathy, problem solving, choice and reducing use of controlling language (Ryan & Deci, 2000) foster individual autonomy and confidence and result in better adherence to self-managed health behaviors with the family, such as low sodium diets (Dunbar et al., 2013) and have been shown to influence motor skill acquisition and self-efficacy in stroke rehabilitation (Wulf & Lewthwaite, 2016). Moving beyond the static home exercise program typically used in therapy, CARE-CITE is a psychoeducational intervention created in collaboration between rehabilitation nurses and physical and occupational therapists to facilitate positive health outcomes for the dyad by improving CP skills and promoting an autonomy-supportive home environment during stroke survivor upper extremity rehabilitation activities.

The primary aims of this study were to evaluate the feasibility (retention of participants, adherence to intervention, adverse events, and CP acceptability of CARE-CITE) and explore preliminary data of the intervention on CP depressive symptoms, fatigue and family conflict surrounding stroke recovery and stroke survivor upper extremity function.

Methods

Sample and Setting

A convenience sample of seven stroke survivors and their CPs were recruited from Emory Rehabilitation Hospital outpatient clinic. Inclusion criteria for stroke survivors included a history of chronic stroke (> 3 months), the ability to initiate wrist and finger extension of the weaker hand (indicating adequate movement in hand to initiate grasp while the stronger hand is limited in use by wearing the CIMT mitt), no severe cognitive deficits as indicated by a Mini-mental (Folstein, Folstein, & McHugh, 1975) test >24, completion of traditional rehabilitation therapy and the presence of a CP (defined as a family member dwelling in the household and self-identified as the primary caregiver). CPs were required to be greater than 21 years of age, able to read and write English and have no significant cognitive deficits as evident by their ability to explain the general purpose of the study and their role as a CP participant to the principal investigator (PI, first author) after reviewing the informed consent.

Study Design

The feasibility study was a single-group, quasi-experimental design with pre-post-test and one month follow-up with a CP exit interview. The Emory University Institutional Review Board approved the study and all participants provided written informed consent.

CARE-CITE Intervention

The CARE-CITE intervention content is described in Table 1. This content was in an interactive workbook for the CP to review over the period of time the stroke survivor received CIMT in the clinic. Each CIMT session was three hours and focused on functional task practice of the upper extremity and how to practice at these tasks at home. A total of 10 sessions were delivered, typically 3–4x/week over a two to three week period. The CIMT therapy sessions occurred in an outpatient clinic environment by trained two physical therapy doctoral students working individually with each participant under supervision of a physical therapist with 15 years of CIMT experience [study PI and primary author]. To maintain treatment fidelity, training, standardization and monitoring of CIMT treatment delivery was done by the study PI. CPs were expected to attend each CIMT treatment session, observing all 3 hours of therapy during the first session (to develop goals, review safety wearing mitt at home, observe therapy exercises), and 30 minutes during the remaining sessions to address any questions regarding the CARE-CITE workbook’s assignments, discuss problems encountered in the home, and review supportive strategies. If the CP could not observe a session, the interventionist physical therapy student would discuss any questions about content with the CP via telephone. Outside of the training sessions, the CP reviewed chapters in the interactive workbook (See Table 1 for workbook chapter topics and brief content descriptions). At the end of the chapters, the CPs responded to self-reflection questions to foster application of information to their own lives. These responses were used as indicators of CP completion of each chapter.

Table 1.

Content of the CARE-CITE Intervention for the Carepartner (workbook) and Stroke Survivor (CIMT)

Workbook Chapters Content
Chapters 1 and 2 Overview of CIMT, including behavior contract (CP and individual with stroke determine activities when mitt worn and taken off) and home diary (to record activities/time wearing mitt). Guidance was provided for problem solving to adapt functional activities at home, both reducing complexity when a task was too difficult and increasing challenge when the task was easily mastered. Examples include: modifying meals using more easily grasped finger foods then shifting to progressing challenge with utensil use or assisting with task set up to increase independence during performance of activity
Chapters 3 and 4 Creating an Autonomy Supportive Environment – how to be empathic, problem solve in performing tasks in the home setting, use non-controlling language and offer choice. Examples include suggesting CP wear mitt on non-dominant hand while trying tasks and offering alternative activities when individual with stroke becomes frustrated during a challenging task
Chapter 5 Secondary stroke prevention – recognizing signs, symptoms and risk factors in both individual with stroke and CP
Chapters 6 and 7 More opportunities for creating an Autonomy Supportive Environment for stroke survivor practice – recognizing challenges and exploring ways to improve communication (avoid controlling language such as “you should exercise”, “you have to do this”); Encouraging CP reflection on his/her role in recovery of the individual with stroke
Chapter 8 CP self-care – recognizing demands of caregiving role, strategies for stress reduction, opportunities for self-care activities and community resources
Chapter 9 Recognizing memory and behavior changes after stroke and strategies to address
Chapter 10 Reviewing personal goals of both CP and individual with stroke, new tasks accomplished and milestones reached
Constraint-Induced Movement therapy Content
10 three hour CIMT sessions over 2–3 weeks in outpatient clinic Session 1: introduction to mitt (don/doff, safety concerns and wear schedule), home diary, behavioral contract and goal setting; initiate functional task practice.
Sessions 2–10: Begins with check-in, review of home diary with dyad and workbook content for CP. Each session focuses on progressive and challenging functional task practice guided by the specific goals of the stroke survivor and CP. End of session – strategies for functional task activities to practice at home.
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During the first CIMT session, the stroke survivor and their CP were oriented together to CIMT, including use of the mitt on the stronger hand and a behavioral contract designating the specific activities for which the mitt should (and should not) be worn. A home diary was used to document activities attempted with the weaker hand and facilitate collaborative problem solving with the dyad when discussing difficulties experienced outside of the clinic therapy sessions. During treatment, the stroke survivor received graded progressive task practice to improve upper extremity function, strength, range of motion and fine motor dexterity. Based upon the family’s goals and stroke survivor movement impairments, functional activities (e.g. to increase shoulder strength, practice putting away groceries in various levels of kitchen cabinets) were recommended to practice between clinic sessions. Each therapy session began with check-in and brief review of material with CP and ended with strategies for home-based task practice. At the end of the final session, the CP and stroke survivor were encouraged to continue functional task practice in the home in relation to their functional goals, but mitt use was discontinued.

Measures

Feasibility of CARE-CITE intervention

To determine feasibility of CARE-CITE, participant retention, stroke survivor and CP adherence to the intervention, and occurrence of stroke survivor adverse events were measured. Stroke survivor adherence was measured by number of CIMT sessions attended (10 total sessions). CP adherence was measured by number of modules reviewed (10 total modules) using questions completed at the end of each section and number of CIMT sessions observed (10 total sessions). To measure acceptability of CARE-CITE, CP perceptions of the intervention were gathered through a CP Exit Interview, a 13-item questionnaire about CP value of participation and helpfulness for the intervention with a response scale of 1–7 (i.e., 1-not helpful at all, to 7-very helpful). Two open-ended questions allowed CPs to provide feedback about the most helpful aspects of the intervention and areas for improvement and any additional comments. The investigator-developed Exit Interview was modeled after others used in research (Winstein et al., 2013) and reviewed by experts in caregiving and stroke for content validity.

Carepartner Assessment

CP depressive symptoms were measured using the Center for Epidemiologic Studies Depression Scale - CES-D (Radloff, 1977), a 20-item, Likert-type scale extensively used to measure depression in numerous healthy (Andresen, Malmgren, Carter, & Patrick, 1994) and physically ill populations, including persons with stroke (Shinar et al., 1986; Zahodne et al.), and caregivers (Meshefedjian, McCusker, Bellavance, & Baumgarten, 1998). Scores range from 0–60, with scores of ≥16 an indicator of potential clinical depression. This scale has been used in the general population and has documented acceptable validity and reliability with adequate alpha reliability coefficients (Andresen et al., 1994; Clark et al., 2004). CP fatigue was measured by Piper Fatigue Scale (Clark, Ashford, Burt, Aycock, & Kimble, 2006; Piper et al., 1998), a 22-item self-report scale with (total score range 0 to 10) higher scores indicated higher fatigue. Strong internal consistency reliability and construct validity have been reported in a similar sample of stroke survivor CPs (Clark et al., 2006). Family conflict surrounding stroke recovery was measured by the Family Caregiver Conflict Scale (Clark, Shields, Aycock, & Wolf, 2003), a 15-item, Likert-type scale (1 “not true at all” to 7 “very true”). Higher scores indicate higher family conflict around stroke recovery, with possible total scores from 15–105. In CPs of stroke survivors receiving rehabilitation, the Family Caregiver Conflict Scale has demonstrated content validity, construct validity, and adequate reliability with Cronbach’s alpha coefficient of .93 (Clark et al., 2003). CP self-efficacy was evaluated by the Revised Scale for Caregiving Self-Efficacy (Steffen, McKibbin, Zeiss, Gallagher-Thompson, & Bandura, 2002), a 14-item instrument that measures caregiver self-efficacy across 3 domains – self-care and obtaining respite, responding to disruptive patient behaviors, and controlling upsetting thoughts associated with caregiving activities. CPs were asked to rate their self-confidence (0–100% - higher scores, more confidence) for each item and the average score for each domain was calculated. Strong internal consistency (Cronbach’s alpha coefficient > .80) and adequate test-retest reliability have been shown for the three subscales for family members of cognitively impaired older adults (Steffen et al., 2002).

Stroke Survivor Assessment

The stroke survivor upper extremity function was measured by the Wolf Motor Function Test, the Upper Extremity Fugl-Meyer test, the Motor Activity Log and the Confidence in Arm and Hand Movement Scale. The Wolf Motor Function Test (Wolf et al., 2001) is a functional assessment of the UE, using 15 speed and 2 strength measures on several tasks and must be administered by a trained evaluator. The Wolf Motor Function Test is reliable (inter-rater reliability r =.97) and valid in the stroke population, and has been used in numerous studies, including the Extremity Constraint Induced Therapy Evaluation - EXCITE randomized clinical trial (Winstein et al., 2003). Upper limb impairment was assessed by Upper Extremity Fugl-Meyer test, (Fugl-Meyer, 1980) total score range 0–66 with higher scores indicating higher functioning. The Motor Activity Log (Uswatte, Taub, Morris, Light, & Thompson, 2006) is a structured self-report interview of upper extremity function using a six-point scale – 0 (unable to use arm for activity) to 5 (use of arm same as pre-stroke) to rank how well the more affected arm is used for 28 functional activities. Reliability (r=0.82) and validity (.72) are supported in individuals with stroke undergoing CIMT (Uswatte et al., 2006). The Confidence in Arm and Hand Movement scale (Winstein et al., 2013) is a 20-item self-report scale of confidence in use of the upper extremity for functional tasks, with items scored on scale of 0 (very uncertain) to 100 (very certain) and mean score calculated. The scale has been shown to be reliable and valid with a moderate relationship to Wolf Motor Function Test scores in individuals 3–9 months post stroke (Winstein et al., 2013).

For the CPs measurements, variables were chosen that were theoretically related and with evidence from the literature showing an effect on CP psychological health. Variables such as CP self-efficacy represent the process by which CARE-CITE may work. Stroke survivor variables measuring change in upper extremity function were chosen based on previous research evaluating the effect of CIMT on stroke survivor recovery.

Procedures

After participants met study criteria and informed consent was obtained, baseline data (all outcome measures mentioned above) were obtained from the CP and stroke survivor at the first clinic visit. Subsequently, the additional clinic visits were scheduled for the CIMT sessions and the CP received the CARE-CITE workbook. The PI explained how to review workbook content and complete reflections at the end of each chapter. After the last CIMT clinic session, the CP and stroke survivor data were collected at an evaluation immediately post CIMT intervention and one month later. Stroke survivors and CP data collection were completed in separate rooms by a trained evaluator, standardized by the study PI.

Data Analysis

Because this was a feasibility study (Leon, Davis, & Kraemer, 2011), descriptive statistics were used to describe all variables including sample characteristics, participant retention, adherence, CP acceptability, stroke survivor adverse events and CP and stroke survivor outcomes. Quantitative data were analyzed using Statistical Package for the Social Sciences software (SPSS 14.0, SPSS Inc. Corp, Chicago, IL, USA).

Results

Participant Characteristics

CPs (N = 7) were middle aged (M = 46.2, SD = 10.9 years) with range of 22–66 years, mostly women (6/7) and working (7/7). They were caring for primarily men (4/7), average age 56.1 years (SD = 16.2, range 22–72) with chronic ischemic strokes (M = 18.4, SD =13.3, range 6–46 months post stroke) with their dominant hand (4/7) affected and who had completed traditional rehabilitation therapy.

Feasibility of CARE-CITE Intervention

All stroke survivors completed the 10 training sessions and follow up evaluations for 100% adherence with no reported adverse events. All CPs completed review of the workbook (as noted by answering the reflective questions at the end of each chapter) and attended the first CIMT clinic training session with their family member. However, 3 CPs were unable to attend every session (2 CPs completed the first and last sessions and 1 completed 5/10 sessions); consequently, in these cases, the review of the workbook was completed via telephone. All dyads were retained in the study. Results of the CP responses to the exit interview structured items are in Table 2. Overall CPs found their participation in the study worthwhile and the intervention helpful and felt CARE-CITE was beneficial for both the stroke survivor and themselves. Open-ended responses to questions about the most helpful aspects of CARE-CITE included content related to community resources, CIMT activities, and supportive interactions with therapists. For improvements, CPs recommended modifying the layout of the workbook, extending the length of the treatment and being exposed to the CARE-CITE content earlier in the rehabilitation process.

Table 2.

Descriptive Statistics of the Carepartner Exit Interview after the CARE-CITE Intervention (N=7)

Value of Study Participation Scale (1–7) M ± SD
Given time commitment and effort for you to take part in the CARE-CITE project and its effect on your ability to help your loved one, how worthwhile has the participation in the project been to you personally? 1-not worthwhile to 7-very worthwhile 6.14 ± 1.07
If you knew before you started what was involved in the CARE-CITE project, how likely would you be to choose to participate 1-not unlikely to 7-very likely 6.57 ± 0.53
Value of the CARE-CITE Intervention
How well do you think your time was used in regard to the CARE-CITE study 1-did not use time efficiently to 7-very much used time efficiently 6.86 ± 0.38
How well did researchers take your goals and preferences into account in your training  1-did not take goals into account to 7 very much took goals into account 6.86 ± 0.38
How much do you think CIMT improved your loved one’s life 1-did not improve account to 7-very much improve 6.71 ± 0.49
How helpful was reviewing what your loved one would be doing each day in the CIMT training sessions 1-not helpful to 7-very helpful 6.43 ± 0.78
How much do you think your involvement in the CARE-CITE project contributed to your loved one’s success 1-did not to 7-very much 6.43 ± 0.98
How helpful were the take home activities 1-not helpful to 7-very helpful 5.71 ± 1.38
How helpful were the open-ended questions 1-not helpful to 7-very helpful 5.71 ± 1.38
How helpful was the format of the workbook 1-not helpful to 7-very helpful 5.71 ± 1.60
Has your participation in the CARE-CITE project taught you new things about stroke, how to support your loved one and yourself 1-did not to 7-very much 5.71 ± 1.38
Overall, to what extent has your experience in the CARE-CITE project improved your quality of life 1-did not to 7-very much 5.29 ± 1.7
How great was the burden of CIMT for you (as CP) 1-no burden to 7 very much burden 1.86 ± 1.07
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Carepartner Assessment

CP data at baseline, post-intervention and at one-month follow up are in Table 3. At baseline, 3 of 7 of CPs reported CES-D scores ≥ 16 indicating possible clinical depression; and moderate fatigue levels. Most CPs (6/7) reported some level of family conflict about stroke recovery (score > 15). Descriptively at post and one-month follow-up, on average CPs reported fewer depressive symptoms, less fatigue, and less family conflict about stroke recovery. CP self-efficacy scores remained similar.

Table 3.

Descriptive Statistics of Major Study Variables for Carepartners at Baseline, Post-intervention and 1 Month Follow-up (N=7)

Variable Baseline M ± SD 1 week post-test M ± SD 1 month follow-up M ± SD
CES-D (poss. min-max 0–60) 16.42 ± 12.75 5.86 ± 2.97 10.14 ± 11.05
PFS (poss. min-max 0–10) 3.62 ± 2.70 1.25 ± 1.16 1.63 ± 1.65
aFCCS (poss. min-max 15–105) 41.43 ± 19.92 ------ 30.00 ± 17.42
SE (poss. min-max 0–100)
 -Respite total 75.57 ± 33.58 87.14 ± 10.64 77.43 ± 30.63
 -Behavior total 83.71 ± 22.70 87.71 ± 17.49 83.71 ± 22.70
 -Thoughts total 59.57 ± 31.33 69.00 ± 36.95 59.57 ± 31.32
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CES-D: Center for Epidemiologic Studies Depression Scale; PFS: Piper Fatigue Scale; :; FCCS: Family Caregiver Conflict Scale; SE: Self-Efficacy

a

FCCS was collected only at baseline and one-month follow up.

Stroke Survivor Assessment

Stroke survivor data at baseline, post-intervention and one-month follow up are in Table 4. Descriptively, better scores were seen in upper extremity impairment (upper extremity Fugl-Meyer), self-efficacy (Confidence in Arm and Hand Movement Scale) and quality of use (Motor Activity Log) after the intervention. The total number of self-identified tasks in the Motor Activity Log that were scored >3 (indicating ability to use the weaker upper extremity without assistance of stronger extremity) were higher post intervention. Faster Wolf Motor Function Test speeds initially seen after treatment were not maintained to follow up.

Table 4.

Descriptive Statistics of Major Study Variables for Stroke Survivor at Baseline, Post-Intervention and 1 Month Follow-up (N=7)

Variable Baseline M ± SD 1 week M ± SD 1 month M ± SD
WMFT (0–121) 23.84 ± 27.02 17.67 ± 20.61 24.49 ± 32.43
UEFM (range 0–66) 38.29 ± 10.73 40.14 ± 11.35 40.57 ± 10.75
MAL (0–5 points) 1.59 ± 1.15 2.54 ± 0.84 2.30 ± 0.72
MAL (items totaling ≥ 3pts) 8.43 ± 7.79 18.29 ± 7.09 17.14 ± 7.80
CAHM (poss. min-max 0–100) 39.88 ± 23.59 56.54 ± 17.37 53.29 ± 18.06
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WMFT: Wolf Motor Function Test; UEFM: Upper Extremity Fugl-Meyer; MAL: Motor Activity Log; CAHM: Confidence in Arm and Hand Movement scale

Discussion

Based on this sample, the CARE-CITE intervention appears feasible based upon stroke survivor adherence rates to the CIMT sessions and no adverse events, and CP adherence to review of the CARE-CITE workbook. While some CP did not observe all clinic sessions, they did review CARE-CITE information with study personnel by telephone. Exit interview surveys results indicated that all CPs expressed willingness to participate in the study again, scored participation as worthwhile and believed their involvement contributed to the improvement in upper extremity function of the stroke survivor. This latter reflection is a key finding from this study, suggesting that family members who feel they have the skills to be more effective in helping their loved one may view CARE-CITE as beneficial. In the exit interview, CPs also did not perceive their being involved supporting the stroke survivor in CIMT to be burdensome.

Although all dyads remained in the study, several CPs were unable to attend all of the clinic-based sessions. Shifting CARE-CITE to the home environment may increase participation, improve accessibility and reduce a travel burden on the family; as well as provide added benefit for the family by providing context for functional tasks to establish more effective goal setting and collaborative problem solving (Barzel et al., 2013; Mayo, 2016; Wottrich, von Koch, & Tham, 2007). A current study is underway testing home-based CIMT with a web-based application of CARE-CITE (Blanton, Clark, & Dunbar, 2017; Blanton, Dunbar, & Clark, 2018).

Descriptively, CPs had less depressive symptoms, fatigue and family conflict around stroke recovery after CARE-CITE. Most CPs reported some family conflict surrounding stroke recovery, scoring almost twice as high at baseline as compared to another CIMT study with CPs of individuals 3–6 months post stroke (Clark et al., 2004). Less conflict reported at follow-up suggests that helping the CP gain an understanding of therapy approaches along with principles of autonomy support may reduce family conflict about recovery. Therefore, including measures of family functioning related to stroke recovery, rather than general family functioning measures may be an important consideration for future nursing and rehabilitation research. While, overall baseline CP depressive symptoms were high; nonetheless, at post evaluation and one-month follow-up, depressive symptoms on average, were lower than the established cut-off score indicating normal range. Fatigue levels were less and although this feasibility study does not allow for significance testing in this small sample, these scores are in the anticipated direction of improvement and may reflect potentially clinically important changes.

For the stroke survivors, initial upper extremity function (Wolf Motor Function Test) scores indicated faster movements with specific tasks; however, on average these improvements were not maintained at follow-up. Average times are comparable to those stroke survivors in the EXCITE (Wolf et al., 2010) study (26.8s baseline, 22.3s post intervention, 24.6s one year later). The change in the self-reported functional task completion in the home environment (Motor Activity Log) scores from baseline to post treatment reached nearly 1-point, indicating a minimal clinically important difference (van der Lee et al., 1999). The total number of tasks that could be completed (Motor Activity Log items ≥ 3) doubled from baseline score of 8.43 to 18.29 tasks, and was maintained at follow up (17.14), potentially indicating that with the CP engagement, the stroke survivor was completing more tasks outside of the clinic setting. One possible explanation for this increase in tasks is that the intervention helps stroke survivors and CPs identify multiple tasks for stroke survivors to practice around the household using their affected extremity. This perception of stroke survivors’ improved quality of use of their affected arm is consistent with the changes seen in their perceived confidence in use of their affected arms.

Study strengths and limitations

We believe this study is one of the first to apply a family-centered approach to facilitate CPs engagement with stroke survivors related to functional activities designed to improve stroke survivors’ upper extremity function. While CIMT was chosen based on the well-defined methodology and effectiveness evidence, potentially any task-oriented therapy could have been used in this approach. These findings add to nursing research by offering insights into CP focused interventions based on Self-Determination Theory/autonomy supportive environments that target specific functional therapy approaches to reduce the negative impact of caregiving after stroke.

Although the sample size was small, this feasibility study is the first step in examining CARE-CITE as a potential intervention to benefit CPs and stroke survivors. Although the single group design has threats to internal validity, this was an important first step to show feasibility. We also did not track the amount of stroke survivor daily practice of upper extremity activities. However, these results provide initial evidence that the CARE-CITE intervention can be successfully implemented and will guide further examination of refining the intervention for testing in a larger pilot study with a longer follow up and earlier in stroke recovery.

Clinical Implications

Rehabilitation nurses collaborating with other rehabilitation professionals can be instrumental in facilitating CPs’ and stroke survivors’ understanding of rehabilitation activities in the home environment. The CARE-CITE intervention represents an adaptation of a family focused nursing intervention, previously examined in persons with heart failure and their caregivers (Dunbar et al., 2013). Using a team approach to involve the CP in the stroke survivor’s upper extremity rehabilitation may help the family understand the importance of functional task practice for stroke recovery while reducing conflicts between stroke survivors and CPs that may occur over recommendations for upper extremity practice in the home. Rehabilitation nurses may find it helpful to share principles of autonomy support to help CPs create a positive environment in the home, by being empathetic, offering choice, avoiding the use of controlling language (e.g. you have to practice, you should practice) and using a problem solving approach. High levels of CP depressive symptoms, even at this chronic stage of stroke recovery, may influence the stroke survivor and CP interaction. Thus, rehabilitation therapists and nurses need to be aware and communicate with members of the team if a family member is experiencing depressed mood, and make referrals as needed.

Conclusions

This study examined the feasibility of an intervention to foster CP engagement in supporting rehabilitation therapy without increasing family conflict around stroke recovery. Results suggest that a CP-focused intervention alongside an intensive, functionally based upper extremity therapy was feasible and was viewed as beneficial. Descriptively, positive preliminary findings were seen in CP variables, and stroke survivor improved upper extremity function for tasks at home. Further studies are needed to fully test CARE-CITE; however, involving CPs may clarify expectations for rehabilitation activities and foster skills for supporting individuals with stroke. To reduce burden on CP’s to attend clinic based educational sessions, a telehealth delivery of CARE-CITE interventions should be explored to increase adherence and accessibility. Nurses can work collaboratively with rehabilitation therapists to teach families how to create an autonomy supportive environment during recovery from stroke to improve outcomes for both the stroke survivor and carepartner.

Acknowledgement:

The study was supported by Comprehensive Neuroscience Center, Woodruff Health Science Center, Emory University, Atlanta, GA

An abstract of this work was presented at Rehabilitation Research at NIH: Moving the Field Forward Conference, May 2016, Bethesda, Maryland and at Combined Sections Meeting of APTA, February 2012, Chicago, Illinois.

The authors gratefully acknowledge the families who participated in this project and Dawn Aycock, PhD, RN for her help with statistical analysis.

Footnotes

Declaration of Interest:

The authors report no conflicts of interest.

Contributor Information

Sarah Blanton, Division of Physical Therapy, Department of Rehabilitation Medicine, Emory University School of Medicine, 1441 Clifton Rd. NE, Room 213, Atlanta, GA 30322.

Deborah Cussen Scheibe, Division of Physical Therapy, Department of Rehabilitation Medicine, Emory University School of Medicine, 1441 Clifton Rd. NE, Room 213, Atlanta, GA 30322.

Ashley Holmes Rutledge, Division of Physical Therapy, Department of Rehabilitation Medicine, Emory University School of Medicine, 1441 Clifton Rd. NE, Room 213, Atlanta, GA 30322.

Bridget Regan, Division of Physical Therapy, Department of Rehabilitation Medicine, Emory University School of Medicine, 1441 Clifton Rd. NE, Room 213, Atlanta, GA 30322.

Colleen Schwartz O’Sullivan, Division of Physical Therapy, Department of Rehabilitation Medicine, Emory University School of Medicine, 1441 Clifton Rd. NE, Room 213, Atlanta, GA 30322.

Pat C Clark, Byrdine F. Lewis School of Nursing, Georgia State University, Atlanta, GA.

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