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

Figures & data

Figure 1. Flow diagram of the modified Delphi 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

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.

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)