Table 3.

Stakeholder Input for the Development and Implementation of an In-Home Supportive Services^a Symptom Assessment Program

THEME subtheme	Stakeholder role	Quote
Unmet need
Program and training	Consumer	Maybe a provider might have to be trained on these things…Whenever something happens they should know CPR, they should know maybe anything to help…my provider wouldn't know where to start. Where or who to call if I have something happened to me.
	Administrator	(Our different agencies) have an ability to really coordinate some sort of system so that we can really provide good palliative care for the clients that we share. It goes beyond what any one of us can do alone
High symptom burden	Consumer	I have a bad case of diabetes…and if my sugar drops, it's like my equilibrium is off. I have problems with my bowels, my hip and…with my feet. Terrible, terrible pain.
	IHSS provider	My first client—she passed away but she was in a lot of pain, mm-hm; a lot of pain. …It was like I couldn't do nothing for her.
	IHSS provider	Walking across the street trying to make this meeting on time. I look back she's an hour behind…She (has) shortness of breath. …She got bronchitis bad.
	IHSS provider	My client is scared. I think she is scared of dying and being alone and there is always something, depression or a lot of pain, and she has a pretty hard time all the time.
Loneliness	Consumer	I don't have any family, though, here…so I'm without anyone at all. That's the other big thing. It wasn't mentioned with all the pain and suffering and stuff is loneliness. All of my friends are dead, all of them… It's impossible to get to know younger people and so you get very, very lonely because nobody wants to talk to a 92-year-old woman.
	IHSS provider	There are only four people in his building that speak English…it's so hard for him …we try to open up avenues for him but it is hard because they fall into depression and they just want to give up…stuck in that building and becoming less mobile.
	Case management staff	I feel like probably only 10 percent of [my clients] actually have someone….They're like 80 or 90 and are like “My kids live out of state.”
Barriers
Culture and misunderstanding	Administrator	It is a barrier that people don't understand what palliative care is… Then they are thinking “Well, now you're telling me that I'm here to help somebody die” … So, we run into that philosophical difference…how this could really be helpful to people in terms of their pain management, in terms of making sure that they're taken care of in the most humane way.
	Administrator	Another barrier is the cultural competency—there's huge ideas about (a) what palliative care means, and (b) how I'm going to die or not going to die. And especially if we're associating the two…There are certain groups who are not going to have this conversation at all ever.
	Consumer	I think it totally depends on the client…I trust (my current provider) with everything I say, but there's been other providers that even when trying to approach it would make me feel uncomfortable.
Overmedicalization	Case management staff	The hired worker, they come in to help them out…“Well, you are here to do your job, what need to be done and then you go home.” And that's it.
	Administrator	IHSS consumers… some of them (are) very worried about the medicalization of the program, and is very concerned about providers getting overly trained.
Overburdened IHSS staff	Consumer	The thing is, right now the job that they have…It's hard as it is. On top of it, if you want to stick them (with) being knowledgeable in medical issues.
	IHSS provider	There's mental problems now too from the stroke. Sweet guy but a whole handful. I'm getting paid 16 hours per week to look after him and I am so busy with this guy. I'm already working overtime.
Staff turn-over	Case management staff	The new people that turn over really fast. …our experienced population is moving into retirement and a new wave is coming in and that has been happening for several years now…The vast majority are very young and very inexperienced; inexperienced in the working world let alone in homecare.
Unintended consequences	Case management staff	It looked like she was scared to tell the niece certain things was going on with her because she was scared that they might be getting to put her in a home. … So if she is in pain, she won't say it, or if she needs the bathroom, she won't let you know because she is thinking that her family don't want to deal with it.
Facilitators
Perceived benefits	Consumer	I, frankly, am happy when my gal says “Have you taken your pills?” because sometimes I'll forget. And she always looks to see if I've taken them or not. And I like that.
	Consumer	I'm all for (my provider following up with my doctor). I mean that way they can say “I was with (X) and she was having shortness of breath, this sort of thing, or she fell yesterday. What do you think I should do? Do you want to see her right away?” I think that's an excellent idea because (it) lets the doctor know what's going on.
	Administrator	And I think the impact on the clients will be really important. I mean, these are clients that are totally marginalized, don't have people who are paying attention to any of this, a lot of them are isolated. They live alone, don't have family, so I think this is—has a lot of potential to truly assist.
	Consumer	I feel like if you're shortness of breath…it's okay for the people that are providing the services to help [the providers] feel like they're doing their job. And that's an important consideration too. “Are we useful? Are we needed?”
Leverage established procedures	IHSS provider	You are observing anyway. You have to observe and find out how the client is feeling… So we are already doing it. We just haven't formalized what we doing.
	Case management staff	(In-home providers) report to their supervisors if they are noticing that there is something that is concerning–they are our eyes and ears so that we can know how we can better support that situation.
	Administrator	We have training facilities and supervisors, and so I think we're in a very unique position to be able to roll something out like this, and train people and this type of service.
Leverage established relationships	Consumer	My provider and I are very close…So it's kind of a very special relationship. …(she) will look at me and say you're not feeling well. And nobody else does that. She just knows. …. And she helps me to talk it through. “Is this serious?” or…maybe I'm going to wait it out a little bit.
	Case management staff	We rely on (in-home providers) to be a set of eyes for those folks who actually need more eyeballing than what they will get from us… Homeworkers that are able to stay with the client for a while…; they are just absolutely invaluable extensions of the clinic.
	Administrator	In-home providers are in most direct contact with the client, is they see changes in their ability to function…I think those that are there all the time see those subtle changes…They're not doing those things that used to bring them joy.
Implementation
Tailored to consumer choice	Consumer	I wouldn't mind (my provider contacting my family) because I made sure that the person that helps me at home knows my son…As long as I gave permission at the time, that's fine.
	Administrator	Because of the strong consumer focus in this program…They have to be able to feel like they're making some choices and they have the information to do that, that they're not being sort of pushed off to a program.
Messaging	Administrator	Rather than describing it in terms that drive us toward medicalization, to use terms that drive us towards quality of life, because the provider and the client can understand that.
	Administrator	I would also be sensitive also to language, because I mean, it's well-known that different cultures respond differently to different words. And so, you want to be sure that not only is it culturally, but also linguistically appropriate.
	Administrator	Sometimes I talk about supportive care. Because it's pretty—it's softer. Very few people don't want support.
	Case management staff	You could frame it in a way that like “This will lead to you having fewer emergency calls,” for instance, as this person's provider…. “This will actually save you a lot of time.”
Training	IHSS provider	It's not just book learning; it's not just watching a video; it is actually doing hands-on so you will go through it. You will talk about it; you will watch a video on it; you'll read about it but then you have to do the practical and then it all sinks in.
	Administrator	I think if your goal is awareness then broad education so that everybody can talk knowledgeably about what palliative care is… I think there would be a lot of value to being able to educate the IHSS workforce in general…and then as consumers make choices about who they trust and want to talk to.
Logistics, workflow, checklists	Consumer	Yeah, if the provider sees the client in any kind, in trouble, then oh yeah, he should call the client's friends, parents, relatives….sometimes (they)…might be able to help them better because they know more about them than the provider.
	IHSS provider	To have a list of things each time to remind you to look at, you could check off and like it would be easier for us who personally work with them to write the notes in those little boxes to check off or to add to…. And they have all these things written down step by step of how to do all these things for homecare.
	Administrator	Maybe we could have some sort of like sheet…where it says “Would you want your care provider to do the following?” …And then you can sort of tailor it to what they want.
	Administrator	So, you give homecare workers the understanding and the tools…find some way for them to have authority or whatever, to call the health provider…or case manager, “My consumer is still in a whole lot of pain and I need to do something.”
Provider support	IHSS provider	I think there should be a support group for providers because it is not easy… I think it would be really helpful because we need support.
	Administrator	I would add…care giver support…I wonder what happens when they've been working with somebody for months or years, and that client goes into the hospital, goes into nursing, dies, and how do we help them with their grief? …a lot of the IHSS workers are the most significant people in the client's lives. And they grieve.
	IHSS provider	…you would have more money when you have your certifications they mean that you are sufficient such as myself where I have–dementia current certificate; …If I was to do private pay, I can require and ask for more money
	Administrator	Often informally, we're putting our more reliable higher skilled folks who don't get paid any more. But I wonder with them if they hear this “Oh, I'm providing premium care now. Do I get paid?” We're trying to figure out how we do that (provide more pay).

^aIn-Home Supportive Services.