Table 3.

Family member–focused barriers and facilitators with syntheses and example quotes

Barriers	Quotes
Lack of physical, mental, or emotional preparedness	• Therapists expressed concerns about whether family members who had poor physical health could monitor patients’ safety during mobility-related activities or provide necessary assistance to prevent falls. ○ “Family members’ own medical issues are a big barrier. . . . You know that this patient is going to need physical assistance, and then [the family member will] come in with a walker and your goals change.” – OT ○ “A patient may have a significant other, but if they are both in their 80s, or 70s, it's not really safe for the significant other to be providing the guarding or the safety that they need.” – PT “[Because of problems in] their postural control and sitting balance, I'm probably not going to get that patient on to [the robotic rehabilitation systems we have available].” – OT • Readiness for adopting a caregiver role could be problematic. Some family members could get very overwhelmed. ○ “The family member also has to feel comfortable providing the assistance 24 hours or whatever we're recommending. Sometimes we may think it's feasible, and [the patient doesn't] need that much cueing. But the family member is a little scared and they don't feel like the patient should go home.” – PT • The nature of the patient-caregiver relationship might affect willingness to perform intimate care tasks. ○ “Are they comfortable helping [the patient] in the bathroom, in the shower? If it's a mother who lives home with her son, you're going to need someone else there. [Also, consider] a brother and a sister that live together.” – PT • Therapists reported the importance of considering the readiness of family members to attempt certain care tasks. ○ “There are certain things [the family member] is still not comfortable with and goes, ‘I'm just not ready,’ I said ‘that's fine, you let me know when you are.’ I think it's about meeting them where they are and not try[ing] to push them into doing things that are outside their comfort zone because that will backfire and ultimately compromise the discharge plan.” – PT
Poor understanding of the diagnosis or the goal of rehabilitation	• The concept of SN was not easy to understand, which often led to inappropriate provision of cues, instructions, or assistance to the patient. ○ “[Family members] sometimes blame the patient, ‘Why can't you just do this? This is a simple cue. Look at your left.’ They don't get it. So then we have to educate them more than once, twice, depending on how receptive they are.” – PT ○ “[Family members would say] ‘why aren't they turning their head? I'm telling them to turn their head.’ Or ‘why aren't they looking at me.’ They don't understand that it's not under the patient's control.” – PT ○ “A lot of times a patient's spouse will come in. [They would speak in] rapid-fire speech. It's. . . . It [shows] impatience.” – OT ○ “It's extremely distracting and depending on the patient's or the family's level of understanding as to what we're trying to accomplish. . . . You may have a nagging [family member] who's like ‘Listen, you have to turn, [the therapist] said to turn!’” – PT • Therapists shared a common experience that it was easier to communicate with family members about SN if the symptoms were severe and easily noticed. However, when the symptoms were mild or subtle, it could be more difficult to explain what SN means. Thus, SN made family training more challenging. ○ “It's easier for them to understand when it's more severe because it's so blatant. [When] it's more subtle, you're trying to explain it and as you're walking [the patient] and you're kind of hoping they run into the wall so that [the family member] can see this is what we're talking about.” – PT ○ “[It] takes a lot longer with regard to family training purposes. Having them become familiar with what the neglect is, how to compensate for it, and all the different strategies that you have to utilize to maintain them.” – PT ○ “[It] can be equally challenging to try and explain it. Especially when you have somebody who is already emotionally overwhelmed and is having a hard enough time absorbing basic information.” – OT
Family members’ behavior and inadequate levels of involvement	• Therapists shared their observations about negative family dynamics (eg, problems in the interpersonal relationship between the patient and the family), low level of family engagement in care (eg, no family available to attend family training as scheduled during weekdays, insufficient engagement in care decisions), inappropriate behavior during therapy (eg, playing with the service dog, talking over the therapist, comparing the patient and other patients in the gym), and lack of willingness to take care of the patient (eg, preferring institution over community discharge). ○ “Just seeing how they interact with each other in the rooms [as] you're walking by their room. They're not even attending to the person. They're outside talking on the phone. Even in the gym, they're talking on the phone. Then [I wonder]. . . . Are they really truly interested, are they coming forward, or are they just there to bring the clothes in or change the laundry?” – OT ○ “A lot of [patients] just don't have family either at all or the family lives far away in another country or another state. It happens more often than not. They don't have anyone else they can rely on for training. They have like their grandnephew who can come in or check in on them. [But] some distant relative is not someone who's able to be there for them.” – PT ○ “Sometimes culturally, you can run into issues if it's like male versus female roles in the house and providing assistance for one versus another. Sometimes it's the female's job to be the caretaker so if the male is the one that is injured, it's not so much a big deal. But if it's vice versa, [I heard one male family member said] ‘that's not what we do, our job is to not be here to take care of them.’. . . Then who would be with this person when they go home. . . ?” – PT ○ “The family members were kind of making the person feel bad about themselves. So when they have negative things, ‘well you can't do this,’ or ‘why can't you do that, you should be able to do that, it was so easy for you before.’ Things like that that really lower a person's morale and ability to thrive so they begin to think ‘well my family says I can't do it, so I'm not going to be able to do it.’” – OT ○ “[The presence of] family members can [be] distracting for their loved one. [The patient] might not focus as much in therapy or might not be able to tolerate or want the loved one to help them.” – OT • Excessive family involvement was also reported to be problematic, requiring special effort on the part of the therapist to build a productive partnership with family caregivers. ○ “[I have to] be firm and caring with [them] so that way they know that you care, and that they know that you are trying to serve their family member's best interests. You are there for them as well, and they have to trust you. But . . . to get that trust takes a lot of time and a lot of energy.” – OT

Facilitator

Quotes

Positive or successful family involvement

• Therapists found supportive family members can make a difference in improving spatial attention and practicing strategies learned in therapy. ○ “Sometimes families can be very motivating for patients. You can use them to get their attention to [the neglected] side and things like that.” – PT ○ “A lot of [families] even in the beginning like the first couple days would say ‘Well what can I do to help make this neglect better? What can I do in the room to just try to help?’” – OT