Table 3 Summary of themes with illustrative quotes & differences across different caregiver identities
[A] Seeking healthcare services post-stroke | |||
|---|---|---|---|
Themes | Sub-themes | Illustrative quotes | Differences across caregiver identities |
A.1. Factoring influencing seeking care | A.1.1. Financial | All these hospital appointments, procedures, and you know medicine, you can only use a certain amount. In-patient, you can claim Medisave, you can claim insurance. But outpatient? He has used up his, he has maxed out his outpatient claim for him. So now, although he is subsidized, but for every clinic appointment, every procedure done, we still have to pay. Like last month alone uh, his out-patient bill was what, about a thousand over dollars. (C10, 49 years, female, spouse caregiver) | - Financial factors were almost twice more commonly reported by spouse caregivers as compared to adult-child caregivers |
A.1.2. Structural or healthcare system related | Polyclinics I don’t know. The reason is it’s long queue so like I’ll bring her down because she saw the Family Clinic, let’s say for fever or whatever, so even like before it happened, I seldom go to Polyclinic because of the long queue. I just cannot afford to. I cannot spare three hours there queueing. Just go downstairs in the Family Clinic. That’s it. (C29, 54 years, male, adult-child caregiver) | - Waiting times and ambience of healthcare services more commonly reported by adult-child caregivers who were generally working - Access to services more commonly reported by spouse caregivers who were generally older than adult-child caregivers | |
A.2. Decision to seek care | A.2.1. Caregiver decides | We also don’t want to put her somewhere far because it would be very hectic to travel. ABC (name of Nursing Home) near my house was full. We left very few choices. (C19, 43 years, female, adult-child caregiver) | - Most commonly reported decision-making scenario discussed was the caregiver deciding to seek care |
A.2.2. Not one person’s decision to make | I think it’s not my decision, let’s put it this way. I think it has to be also between my sis and myself… (C16, 53 years, female, adult-child caregiver) | - Adult-child caregivers more commonly reported decision-making scenario where seeking healthcare was based on inputs from multiple stakeholders | |
A.3. Role of caregiver in seeking care | A.3.1. Recognize symptoms | And then he call me then I see him different lah. His mouth is so different, I was in there. I called the ambulance. (C04, 53 years, female, spousal caregiver) | - Spousal caregivers described recognizing symptoms more commonly than adult-child caregivers |
A.3.2. Coordinate care | It is very good. It’s very fast. In fact, I asked the XX Hospital doctor to transport my mom all the way in YY (step-down care facility) and they said no. They need my mother to go to XX Hospital (- -) Yes. But to send my mother to XX and YY, we take turns. (C03, 58 years, male, adult-child caregiver) | - Adult-child caregivers were more involved in the role of coordinating care as compared to spousal caregivers | |
A.3.3. Accompany to appointments | Normally I cannot handle my mother alone, normally my sis will come with me, but if she is not available, then I ask my brother (- -) to transfer her. (C19, 43 years, female, adult-child caregiver) | - Adult-child caregivers more commonly highlighted accompanying the stroke survivor for healthcare appointments as compared to spousal caregivers | |
[B] Experience of healthcare encounters post-stroke | |||
Themes | Sub-themes | Illustrative quotes | Differences by caregiver identities/types |
B.1. Service around the patient | B.1.1. Patient choice or preference | We cannot say anything lah. That’s why I go. I go also. Sometimes I ruin their mood. I say, I don’t want to go ladies shower, what to do? When I talk, they’ll talk. It’s all education na. (P01, 76 years, male, stroke survivor) | - More commonly reported by spousal caregivers as compared to adult-child caregivers |
B.1.2. Dignity and respect | Stroke Patient: They don’t know. I’m like a, like a guinea pig. Every morning coming to like, asking me things. “Yeah, I’ll be there.” “How’s everything up here?” There’s more people coming. (P10, 62 years, stroke survivor) Caregiver: Yes. It’s quite basic and all that lah but, but like I say, give him a choice. They didn’t give him. (C10, 49 years, female, spouse caregiver) | - Similar across both spouse and adult-child caregivers | |
B.2. Service with care | B.2.1. Communication during a healthcare encounter | So my pastor stay but very difficult. Sometimes the doctor say, I cannot understand because I am not very educated you know. And the doctor say, and I can’t understand. (C01, 70 years, female, spousal caregiver) | - Importance of sharing information was a common thread across both spouse and adult-child caregivers - Spouse caregivers valued more the manner in which they were spoken to as compared to adult-child caregivers - While adult-child caregivers had no problem understanding the content of communications with healthcare professionals, spouse caregivers struggled in some instances |
B.2.2. Trust in the healthcare system | I said, “you know the reason of this?” Ignorance is not bliss and the doctor will kill you. (Laughs 5:03) or the medicine, that can kill you. (P09, 55 years, female, stroke survivor) | - Similar across both spouse and adult-child caregivers | |
B.2.3. Personal touch experienced in a healthcare encounter | They say, “You also must come.” I said, “Okay lah.” I went inside there, I saw the, the decoration, the birthday. I know. So wonderful. All the staff make so happy my husband. So they give teddy bear present. Then they write “We love you all!” So my husband is so happy. (C01, 70 years, female, spousal caregiver) | - Personal touch was more commonly reported by spousal caregivers as compared to adult-child caregivers | |
B.3. Role of caregiver in healthcare encounters | B.3.1. Advocate for the stroke survivor | I say, “What can you offer there?” It’s totally different from the one at hospital or at the step-down care facility. They don’t want to give me the hospital, so yeah. “You don’t want to give me hospital, I’ll take the step-down care facility. But I’m not willing to go for the home type of exercises.” (C04, 53 years, female, spousal caregiver) | - Spousal caregivers more commonly described their roles as advocates for the stroke survivors as compared to other caregivers |
B.3.2. Active participant in healthcare encounter | I was briefing the doctor everything: what she took before, when she choked, blah, blah and everything. They say we have to put her on observation, and we will call you when the ward is ready. I said, okay that is fine. (C27, 51 years, female adult-child caregiver) | - Adult-child caregivers were more active in giving and receiving information - Importance of sharing with the caregivers was most commonly highlighted by adult-child caregivers | |