Development and validation of a quality of relationship intervention for stroke survivor-family caregiver dyads

ABSTRACT

Background: The relationship between stroke survivors and family caregivers is critical for the well-being of both dyad members. Currently, there are few interventions targeted at dyads and focused on strengthening the relationship between survivors and family caregivers.

Objectives: This study reports on the development of a customizable, strengths-based, relationship-focused intervention driven by the real-world experience and advice of stroke dyads. It also describes the “tips” that survivors and family caregivers offered for dealing with relationship challenges after stroke.

Methods: Content of the intervention, including relationship tips, was derived from semi-structured interviews with N= 19 stroke dyads. A modified Delphi process with a national panel of 10 subject matter experts was used to evaluate and refine the content of the intervention and the associated screening tool.

Results: Seventeen domains of relationship challenges and tips were identified. Consensus was reached among experts that the intervention content was relevant to the goal of helping survivors and family caregivers maintain a strong relationship after stroke; (2) clear from the perspective of stroke survivors and family caregivers who would be using it; (3) accurate with respect to the advice being offered, and; (4) useful for helping stroke survivors and family caregivers improve the quality of their relationship.

Conclusions: This study extends the limited body of research about dyadic interventions after stroke. The next steps in this line of research include feasibility testing the intervention and evaluating its efficacy in a larger trial.

KEYWORDS:

• Stroke
• family caregivers
• dyads; couples
• relationships
• intervention
• content validity

Introduction

Following discharge from initial hospitalization, approximately 80% of stroke survivors return home where they depend upon family members for critical support.¹ Although the experience of being a family caregiver is nuanced and complex, caregivers consistently report higher levels of stress than non-caregivers.² Moreover, as many as 52% of caregivers exhibit symptoms of depression that typically do not improve over the course of recovery without intervention.^3–5 Because caregiver and survivor emotional health are intertwined,^6–8 systematic reviews similarly conclude that approximately 31% of stroke survivors also experience depression.^9,10

In addition to impacting the health of individuals, stroke and stroke caregiving can be challenging for relationships. Approximately 54% of families dealing with stroke experience relationship problems and as many as 38% of couples experience overt conflict¹¹ that may stem from feelings of isolation, lack of reciprocity of emotional support and tasks, decreased harmony, and communication difficulties.^12–19 For spousal caregivers, decreased sexual intimacy also is frequently reported as a concern.^20,21 For those who manage to maintain a strong relationship, the rewards of caregiving may be a protective factor against depression and other poor outcomes.²² This reinforces the importance of facilitating and strengthening positive interactions and relations for those who may need it.

A number of interventions for stress, depression, and other negative psychosocial outcomes after stroke currently exist, most of which focus on individual survivors or caregivers. When stroke survivors exhibit depression, antidepressant medications are the primary treatment.²³ However, treatment for stroke caregivers has been more varied. In addition to antidepressant medication, a variety of interventions have been employed, including cognitive-behavioral psychotherapy,²⁴ skill mastery,²⁵ stress management,²⁶ provision of information,²⁷ bolstering of social support,²⁸ managing emotions and communication,²⁹ coping and problem-solving,³⁰ or different combinations of these strategies. What unifies and to some extent limits the effectiveness of these interventions, is their focus on individual survivors or family caregivers, with little attention being given to the care dyad and the relationship between care partners that may be foundational for positive outcomes.^7,31

A growing body of literature supports the value of a dyadic approach to theory, practice, and research with chronic illness populations.^32–34 However, there are at present very few interventions that adopt such an approach. Cheng et al.³⁵ and Bakas et al.^36,37 conducted systematic reviews of caregiver and dyad psychosocial interventions after stroke. Dyad interventions were largely consistent with those used for survivors or caregivers alone and included various combinations of skill mastery, problem-solving, social and community support, and health maintenance or improvement for individual survivors or caregivers. Only a small number of interventions explicitly aimed to improve relational outcomes and even fewer demonstrated positive effects for both members of the dyad.^38–40

More recently, Terrill et al.⁴¹ implemented a pilot study with 11 stroke survivor-spousal caregiver dyads. In addition to individual outcomes including resilience, quality of life, and depression, the authors sought to improve relational outcomes such as positivity and negativity between dyad members. Although participant outcomes were not reported, findings demonstrated the feasibility of this dyadic, self-administered, positive psychology-based intervention and suggested that this may be a novel and promising approach. Ten of the 11 dyads who were originally enrolled completed the study, participated in at least six of the prescribed eight sessions, and perceived benefit from the intervention.⁴¹

The purpose of this intervention development and validation study is to extend the limited body of research about dyadic interventions in stroke and provide insight into the lived-experiences, advice, and perceived relationship strengths of stroke survivors and family caregivers. Specifically, we describe the process that was used to validate the content of a dyadic post-stroke intervention entitled, Hand in Hand: A Partners’ Guide to Managing Stroke Together, including the 17-item Relationship Assessment Questionnaire (RAQ) used to tailor the intervention materials to the needs of each dyad. We also provide examples of the strategies and advice (“tips”) dyads offered for maintaining a strong relationship after stroke that serve as the foundation for the Hand in Hand program.

Methods

Development of the hand in hand program and RAQ

The methods used for the qualitative portion of this study conform with the COnsolidated criteria for REporting Qualitative research (COREQ) guidelines.⁴² Content of the draft Hand in Hand program and RAQ was driven by data collected during semi-structured interviews, conducted in participants’ homes by two members of the research team (study coordinator and PI), with 19 stroke dyads (11 spousal, 8 adult child-parent) recruited through the [blinded for review] Comprehensive Stroke Center. Both interviewers were middle-aged white males with a Master’s degree and PhD, respectively. Both interviewers had training and experience with research interviewing. Study participants did not know the interviewers prior to meeting them.

The interview guide and subsequent intervention materials were informed by two complementary theories about how family dyads cope with chronic illness: the Systemic Transactional Model of Stress and Coping⁴³ and the Developmental Contextual Model of Coping.³³ The final data consisted of approximately 25 h of audio recordings, 528 pages of transcribed interviews, and 34 summary case reports which were used to contextualize the interviews.

To be included in the study, participants had to be at least 21 years old, within 12 months of stroke, living together in the community or spending a “significant amount of time together in care-related activities” (reported by participants), without significant cognitive impairment, and capable of providing informed consent and participating in study activities. Dyads were excluded if the survivor had severe aphasia to the degree that s/he could not participate even with communication aides or, if either person had a history of severe mental illness such as suicidal tendencies, severe untreated depression, or manic depressive disorder. Data saturation was reached after 19 dyads. Approximately 68% of survivor participants were female and 68% were white, with an average age of approximately 67 years (range = 43–88 years). Approximately 53% of family caregiver participants were female and 68% were white, with an average age of approximately 56 years (range = 22–85 years).

Three members of the research team (study coordinator, PI, research assistant) analyzed the data and an outside observer provided feedback about the process on an ongoing basis. Using an interpretive description approach which includes data immersion, inductive interpretation, and an emphasis on the utility of findings for practice,⁴⁴ 17 common relationship challenges were derived from the qualitative interviews. The draft RAQ consisted of 17 items rated on a 7-point Likert scale which ranged from Extremely Difficult (−3) to Extremely Easy (+3). For example, “In our relationship since the stroke. managing stroke-related communication issues has been … ”; “ … agreeing about how much we can each do has been … ”; “ … adjusting to the roles of ‘survivor’ and ‘caregiver’ has been … ”; etc.

Each Tip Sheet that, together, constitute the Hand in Hand program corresponded to one of the 17 relationship challenges listed in the RAQ. The Tip Sheets included information, resources, and short exercises designed to help “care partners” maintain a strong relationship after stroke. All Tip Sheets were written at the 8^th grade level (determined by the Flesch-Kincaid Grade Level in Microsoft Word) and included illustrative quotes from stroke dyads that were gathered during the qualitative interviews. Tip Sheets 1 through 4 focused on issues that arise when one or both partners experience communication (i.e., aphasia), physical/mobility, cognitive, or emotional issues. Tip Sheets 5 through 7 focused on helping partners reach agreement about different aspects of recovery. Tip Sheets 8 through 10 dealt with helping partners work together to meet their practical and emotional needs, including the need for personal space. Tip Sheets 11 through 14 focused on adjusting to new roles and realities after stroke. Tip Sheet 15 offered advice for helping dyads deal with relationship problems that existed before stroke. Tip Sheets 16 and 17 described strategies dyads could use to get needed support from other family members, friends, peers, and professionals.

Expert panel participants and Delphi process

Based upon the modified Delphi processes described by Bakas et al.⁴⁵ and Fisher et al.,⁴⁶ the draft Tip Sheets and RAQ were circulated to a national panel of 10 subject matter experts: Three health-care providers, identified as experts by having at least 5 years of clinical experience with post-stroke dyads; Three researchers, identified as experts by having a doctoral degree and a strong record of publication in this area; and four “laypersons” (i.e., two-stroke survivor-family caregiver dyads). Experts completed a short demographic questionnaire that included items about their gender, age, professional discipline, academic degrees, years in the stroke recovery field (i.e., for providers and researchers), and years living with stroke (i.e., for survivors and caregivers). With a rating form developed for this study, experts then rated the extent to which the RAQ (analyzed by experts as a total questionnaire, not at the item level) and each Tip Sheet was (1) relevant to the goal of helping survivors and family caregivers maintain a strong relationship after stroke; (2) clear from the perspective of stroke survivors and family caregivers who would be using it; (3) accurate with respect to the advice being offered, and; (4) useful for helping stroke survivors and family caregivers improve the quality of their relationship. Ratings were on a Likert scale ranging from 1 (strongly disagree – not relevant/clear/ accurate/useful at all) to 5 (strongly agree – extremely relevant/clear/ accurate/useful). Frequencies and modal responses were calculated using SPSS v25.⁴⁷ Figure 1 depicts this process.

Figure 1. Flow diagram of the modified Delphi process.

Experts also provided written qualitative feedback about the RAQ and Tip Sheets including which Tip Sheets they felt were the most/least helpful and why, other relationship problems that should be addressed in the program, general suggestions for making the program better, whether or not they felt the overall program would be helpful to survivors and family caregivers, and whether they would recommend the program to others. These data were organized into a single document which was then used to make suggested revisions to the program. Experts were given a $50 gift card in appreciation for their time. A professional graphic designer was used to ensure that the final materials were visually attractive. All activities were approved by the University’s Institutional Review Board which consists of 19 members.

Results

Table 1 presents the demographics of the expert panel which consisted of an Occupational Therapist, Nurse, and Psychologist (stroke health-care providers); a Neurologist, Nurse, and Psychologist (stroke researchers); and two-stroke survivor-family caregiver dyads (“laypersons”). Health-care providers and researchers were female and ranged in age from 36 to 68 years old. Cumulatively, these professionals had approximately 109 years of experience in the field of stroke recovery. Laypersons ranged in age from 47 to 51 and were between two and 3 years into the recovery process.

Table 1. Expert panel member demographics.

Role	Discipline	Highest Degree	Experience with Stroke (Years)	Gender	Age (Years)
Healthcare provider	Occupational Therapy	OTD	30	Female	53
Healthcare provider	Nursing	PhD	20	Female	62
Healthcare provider	Psychology	PhD	20	Female	53
Researcher	Neurology	MD	5	Female	36
Researcher	Nursing	PhD	29	Female	68
Researcher	Psychology	PhD	5	Female	46
Survivor	Layperson	–	2.25	Male	50
Caregiver	Layperson	–	2.25	Female	47
Survivor	Layperson	–	2.90	Male	51
Caregiver	Layperson	–	2.90	Female	51

Results of the modified Delphi process are presented in Table 2. Per Fisher et al.,⁴⁶ expert panel agreement that the RAQ and Tip Sheets were accurate, clear, relevant, and useful was determined by at least 75% of panelists indicating “agree” or “strongly agree” for each criteria. By this standard, we achieved consensus on the RAQ and Tip Sheets in the first round of review. However, none of the intervention components produced 100% agreement among experts across all four criteria. Tip Sheets #3, #4, #5, #7, #8, #9, #13, and #14 produced the highest and most consistent ratings among experts, whereas the RAQ and Tip Sheets #1 and #15 produced the lowest and least consistent ratings.

Table 2. Expert panel ratings of intervention materials.

	Accurate		Clear		Relevant		Useful
	Modal Response	% Agree or Strongly Agree (n)	Modal Response	% Agree or Strongly Agree (n)	Modal Response	% Agree or Strongly Agree (n)	Modal Response	% Agree or Strongly Agree (n)
Component
RAQ	–	–	A	90	SA	100	A	80
TS #1	A	80	A	80	A	100	SA	90
TS #2	SA	90	SA	90	SA	90	SA	90
TS #3	SA	90	A	100	A	100	A	100
TS #4	SA	100	SA	90	SA	100	A	100
TS #5	SA	100	SA	90	SA	100	A	100
TS #6	SA	100	SA	90	SA	90	SA	90
TS #7	SA	100	A	100	SA	90	SA	100
TS #8	SA	100	SA	100	SA	100	SA	90
TS #9	SA	100	SA	90	A	100	A	100
TS #10	SA	100	A	90	A	90	SA	90
TS #11	SA	100	SA	100	SA	90	SA	90
TS #12	SA	90	SA	90	SA	100	SA	90
TS #13	SA	90	SA	100	SA	100	SA	100
TS #14	SA	100	SA	100	SA	100	A	90
TS #15	SA	90	SA	100	SA	90	SA	80
TS #16	SA	90	SA	100	A	100	SA	90
TS #17	SA	90	SA	90	SA	100	SA	100

RAQ, Relationship Assessment Questionnaire; TS, Tip Sheet; A: Agree; SA: Strongly Agree; Experts were not asked to assess the accuracy of the RAQ.

For all intervention components, experts provided editorial suggestions and detailed feedback about strengths of the program as well as ways to make the program better. Comments about the program’s strengths included: “I really loved Tip Sheet #5, very good.”; and, “I think [Tip Sheet] #14 is very useful because there is probably nowhere else that survivors and caregivers will encounter this.” Suggestions for improvements to the program included adding references and suggested readings to the end of each Tip Sheet, adding more “helpful worksheets – like homework or practice exercises” and using “different colors, fonts, pictures, [and] boxes, to draw the eye.” Whenever possible, we incorporated these suggestions into the final materials.

Table 3 presents the broad topics of the 17 Hand in Hand Tip Sheets along with sample quotes from survivors and caregivers who participated in the semi-structured interviews. The Tip Sheets were drafted in 14-point font and varied in length from four to 10 pages. Most contained images, supplemental resources, selected references and further readings, and checklists or worksheets.

Table 3. Tip sheet topics and sample quotes from the Hand in Hand program.

Topics	Sample Quotes
#1. Maintaining a strong relationship when the survivor has aphasia or other communication issues	“I can’t [talk] like I used to. I still … although I can’t word it like I used to word it. He has to help me and then I get [the word] out by us working together.” (survivor) “I will listen first before speaking. Everyone must be quick to hear, slow to speak, and slow to get angry. I want him to just get to the point, and sometimes he can’t access that information to get to the point quickly, so it’s hard for me to listen with an open heart and mind. That rule is really important for me. I still struggle with it but I’m trying.” (caregiver)
#2. Maintaining a strong relationship when the survivor has physical or mobility issues	“My strategy [would be] to let [the survivor] do as much as they can do and then if you need to help them, help them. But ask them first. Just don’t jump into doing. Ask them first. Let them show you how much they can do before you go doing for them.” (survivor) “It’s all a matter of limiting the element of surprise which can cause or eliminate stress. When navigating outside the home, this means planning ahead and allowing extra time.” (caregiver)
#3. Maintaining a strong relationship when the survivor has thinking or memory issues	“One of the things they say to me which frustrates me is they’ll say, ‘Mom, you don’t listen to us. You’re not listening. ‘Well,’ I say, ‘I’m listening. I’m not processing. You better remember that. It’s part of the stroke. Some things get gurgled, you know?’” (survivor) “Really, its keeping him focused. He’s probably talking about the yard, the house, everything out there. I have to keep him focused on what we’re doing now.” (caregiver)
#4. Maintaining a strong relationship when either partner has emotional issues	“Supporting each other because others can’t be [there] like we are for each other. We were like that before the stroke but now it’s on a 10.” (survivor) “I feel like I talk to her more and try to encourage her. I try to give more of that than I ever did in the past.” (caregiver)
#5. Reaching agreement about how much the survivor and caregiver can do after stroke	“Listen to what the person is trying to explain to you and how they feel … Allow them to be able to do what they can do. And if they can’t figure out that they’re not able to do it, just sit and talk to them calmly.” (survivor) “You really just have to be observant and watch their actions and their activities and what they’re doing.” (caregiver)
#6. Reaching agreement about each partner’s motivation and commitment to rehabilitation	“The exercises people are giving me work. You just have to be willing to do it. And people have to understand that you can’t keep telling somebody, ‘Help her’, when they were used to being able to do it. That’s the frustration.” (survivor) “Put yourself in their place. You have to stick it out together. Focus on the improvement the person has made. Give them the support they need. I look at how far we’ve come, not how far we have to go.” (caregiver)
#7. Reaching agreement about what the future holds	“I guess they’ve got to keep it realistic, and they’ve got to anticipate that at first, it’s going to be a lot more than they probably bargained for.” (survivor) “We gotta get to a point where we have some kind of vision of the future … If we don’t wanna get stuck, we have to plan.” (caregiver)
#8. Working together to meet practical needs (e.g., managing finances, appointments, housework)	“We usually solve it together, [if] it’s money-wise, we talk that over and try to find the best solution.” (survivor) “We try to have weekly budget meetings where we sit down and say, ‘Okay, this is what’s left. These are our needs. How are we gonna address the needs coming up?’ I didn’t want to make a decision and then have him upset with the choice I had made. It slows things down, but at least you’re on the same page.” (caregiver)
#9. Working together to meet emotional needs (e.g., feeling respected, appreciated)	“Showing, not just saying but showing, that you are thankful for the most basic of functions. Getting up and emptying a urinal at 3 o’clock in the morning? You better … ” (survivor) “I guess it goes back to, both partners, they have to see what the other needs. When he would say, ‘I know this has been hard on you.’ That would just mean so much to me. Because, he didn’t say it often, but he would say it most of the time when I needed it.” (caregiver)
#10. Working together to meet each partner’s need forpersonal space or respite	“She forces me to go play golf, to go downstairs. I spend time on the computer. She’s not so much into sports. Even if we’re in the same room, I might be watching the World Series and she might be in her book or something.” (survivor) “I need time for me. In order for me to help you. I say, if I’m stressed out and angry I’m gonna take it out on you.” (caregiver)
#11. Adjusting to the roles of “survivor” and “caregiver”	“I would say as far as the caregiver, they need to understand how far they want to go, how much they really want to do and relay that to that person who has had a stroke, what they can do and what they can’t do, what they’re willing to do and what they’re not willing to do.” (survivor) “The caregiver, he’s gotta set boundaries for himself. What are the boundaries you expect with this relationship? It’s very important you manage that relationship.” (caregiver)
#12. Adjusting to changes in household responsibilities or leadership	“You have to get outside yourself. People can be self-absorbed. If it’s me then it’s good. If it’s not me there’s no good ideas. Sometimes you have to defer to the other person. [For example,] I’m not the driver. I need to know when to keep my mouth closed”. (survivor) “With this stroke, I have made a conscious decision not to cut her out of anything. To include her in everything. I tell her everything. There’s nothing she doesn’t know. Like where I’m going or what I’m doing or what we’re gonna do. She knows it all.” (caregiver)
#13. Adjusting to changes in activities that partners can do together	“You have to prioritize. Your partner has to be first, before anybody else. You’ve got to do that.” (survivor) “We’re working on assembling an arsenal of fun things to do together. Just walking through the grocery store together is time away from the house, it’s time away from the kids and the stress. If you don’t spend time together then you don’t have the time to talk through issues. You don’t have time to share happy times, either. You want to have a balanced relationship where it’s not just all problem, problem, problem discussions. Let’s invest in each other and grow, not just survive.” (caregiver)
#14. Adjusting to changes in physical contact or intimacy between partners	“Yeah, intimacy. I come home from work and ask her how her day is. I’m not even going to say what happened at work. Just right in the door, we kind of hold each other. She appreciates it, and it’s reciprocal.” (survivor) “I think [people] just have to know, it is going to be different. You get through it, but it’s going to be different. You just, kind of, have to go with it and see what they need.” (caregiver)
#15. Dealing with relationship issues that existed before stroke	“We deal with things now, where we used to just push it under the rug.” (survivor) “I’m the type that once I say what I have to say then I’m done. Basically I’ll just shut down, I won’t say anything else. I think the stroke woke us both up.” (caregiver)
#16. Getting support from family members and friends	“Make sure you have a support system.” (survivor) “Your friends, they want to help. Accept help, although this can be hard to do sometimes.” (caregiver)
#17. Getting support from peers and professionals	“I have fallen two times. I learned the first thing you do is you just sit there and take a deep breath and relax. Don’t try to get yourself up yet. Just sit and relax first. Hearing [this] from other stroke patients, I find valuable.” (survivor) “Be informed about what exactly is going on and realize that doctors are human too and that the best thing that you can do is give them the background and tell them what you know, what is normal and what is not.” (caregiver)

Discussion

The intervention described in this study builds upon existing theory^32–34 and research^38–41 aimed at improving outcomes in both members of the care dyad. This study also provides insight into the lived experiences of stroke dyads themselves. Healthcare and other providers may find this information to be valuable as they interact with survivors and family caregivers.

Content validity of the Hand in Hand program

Based upon Fisher et al.,⁴⁶ we anticipated that the draft program would need to be circulated multiple times among experts before consensus could be reached. We were happily surprised to reach consensus after only one round (i.e., with at least 75% of experts indicating “agree” or “strongly agree” for each criteria). Reviewers also provided rich qualitative feedback and suggestions about how to make the program better and potentially more effective for stroke dyads. This feedback, from different disciplinary orientations (e.g., occupational therapy, nursing, psychology, medicine) and from laypersons with lived experience coping with stroke, was invaluable to the process.

Although the majority of experts agreed or strongly agreed that each component was accurate, clear, relevant, and useful on the first round of review, ratings were not uniformly positive. Where we had lower ratings from individual reviewers, we gave special consideration to that reviewer’s suggestions for improvement. For example, one expert gave a low rating to the clarity of Tip Sheet #4 and commented that the “terms/labels were not consistent”. Another reviewer gave a low rating to the relevance of Tip Sheet #11 because it was “fairly generic and needed a bit more meat to it.” This feedback was discussed among the research team and led to improvements in those Tip Sheets.

Based upon the work of Bakas et al.,⁴⁸ we also anticipated having to eliminate one or more Tip Sheets altogether because of redundancy in content. Reviewers did note some overlap between certain Tip Sheets (e.g., #2 and #5). However, after careful consideration and further review of our data (e.g., one expert stated, “some overlap/redundancy can be helpful”), we decided that some degree of overlap was acceptable at this stage of development. Reviewers also had suggestions for additional content (e.g., more information related to dealing with stroke when one has young children). This feedback was used to enhance the existing materials but unlike Bakas et al.,⁴⁷ we did not choose to develop additional Tip Sheets to accommodate these suggestions.

Strategies and advice offered by stroke dyads

Similar to other interventions that are driven by first-hand information from the populations for which they have been developed,²⁵ we found that stroke survivors and family caregivers had extremely rich and relevant tips for dealing with the relational aspects of recovery. Table 3 presented a brief sample of participant quotes. The Hand in Hand program itself contains many more. We are finding that for survivors and family caregivers, these quotes help to reinforce the family-driven, strengths-based process that was used to develop the program. Our hope is that this will lead to better outcomes.

Study limitations

As with any research, the present study had limitations. First, although the principal investigator is male, the health-care providers and researchers who rated the materials and provided feedback were all female. It would have been valuable to include male providers and researchers on the expert panel, as studies suggest that provider gender can influence provider-patient interactions, patient satisfaction, and other outcomes.^49–51 Accordingly, it may be that provider gender also influences perceptions of the relationship between patients and family caregivers. Second, the stroke survivors and family caregivers who rated the materials and provided feedback were all between 2 and 3 years into recovery and all very close in age. Research has shown that the first few months after stroke can be a tumultuous time for survivors and family caregivers as dyad members work to adjust to post-stroke life, establish new routines, and learn new ways to communicate with one another.⁵² Thus, it may have been valuable to include stroke dyads who were closer to the illness event, as opposed to having wrestled through the relationship problems and tips presented in the Hand in Hand program months or even years before. Including dyad experts at different stages of life may also have yielded more information.

Conclusions

Examining content validity is a critical step in the development of psychosocial interventions in stroke.⁴⁵ This article described the process that was used to validate the content of the Hand in Hand program, a customizable intervention based upon the lived experiences of stroke survivors and their family caregivers and designed to strengthen the quality of relationship between dyad members. We also provided examples of the tips dyads offered for maintaining a strong relationship after stroke that drive the Hand in Hand program.

Presently, we are conducting a pilot RCT to test the feasibility of the Hand in Hand program. Recruitment has been steady and anecdotal data suggest that the Hand in Hand program is being well-received. We anticipate completing the feasibility study soon and depending upon the results of that study, testing the efficacy of the Hand in Hand program in a larger trial. Ultimately, we hope to make the program broadly available to survivors and family caregivers whose relationship may benefit from additional support. This would meet a great need in this community, considering the prevalence of relationship problems after stroke,^1,11,52,53 the importance of a strong relationship between dyad members for prevention of depression and other poor outcomes,^7,31 and the current lack of post-stroke interventions targeted at both members of the care dyad.^35–37

Disclosure of interest

The authors report no conflicts of interest.

Acknowledgments

Thank you to [other study staff - blinded for review] for their assistance with this study and to [expert panel members - blinded for review] for the valuable feedback they provided. We also thank the stroke survivors and family caregivers who generously provided data upon which the Hand in Hand program is based.

Additional information

Funding

This work was supported by the [blinded for review].