We interviewed 20 informal caregivers, nine of whom had a Turkish background, four a Moroccan background, three an African Surinamese background, and four a South-Asian Surinamese background. Most of the caregivers were women (16), and many were responsible for a large part of the care for their loved one, either continuing at the time of the interview (7) or in the past before the patient was admitted to a nursing home (4). All of the male respondents who were taking care of their loved ones themselves (2) were partners of the patient; the interviewed sons were not providing care themselves but were the primary contact for the patient care.
The following factors were vital to the dignity of informal caregivers: (1) dignity as providing good care, (2) the dignity of the patient, (3) their interaction with the patient and significant others, and (4) the acknowledgment and support of their caretaking role by care professionals. Caregivers also reported that the caregiving itself was part of their dignity despite having given up part of their lives, and they described several relational motives for giving care to the patient.
Dignity as providing good care
For all informal caregivers, the provision of good care for their loved one was a prominent aspect of their own dignity. Thus, for many, ensuring that the patient received good and dignified care from healthcare professionals, and that the patient’s choices and preferences were respected, was important to the caregivers’ dignity.
My own dignity, ... I never really gave thought to it.... I am Fatima [fictitious name] and I come here for my dad. I come visit my dad and I hope he’ll be cared for well. And if not, I’ll get riled and then.... Some people were scared of me here. (#15)
For many caregivers, their dignity was also related to providing good care to the patient either by themselves or together with family members. Admission to a nursing home, in particular, was viewed by many as undignified. Even when such a care handover was considered necessary, some caregivers still felt they had “discarded” the patient, and that feeling affected their dignity.
Interviewer: And how has your own sense of dignity changed in this process? ... Or did you yourself feel or experience something in relation to this?
Respondent: In the beginning, I was very emotional, because we’d put her here [in the nursing home]. That we’d abandoned her here. Like, “Now you’re a burden. You’re a danger to yourself and your surroundings.” [But] what we’re doing is the best [option].... The responsibility that would come with it, I wouldn’t want it. Because of our history, I wouldn’t want it. But I’ll walk away from here. I’ll get in my car and go home. And I’ll leave her here. (#16)
Although informal caregivers put considerable effort into caring for their loved one, they sometimes felt others might not think it was enough effort. If others in the community did not acknowledge the amount of effort they put into the caregiving, or lacked knowledge about the disease and thus wrongly judged the amount of care needed, such views negatively influenced caregiver dignity.
Interviewer: Have you ever experienced anything in your surrounding [social circles] that affected dignity?
Respondent 1: That gossip by others, that will always happen.
Respondent 2: People can’t appreciate all the things you do. They try to belittle you. That makes you feel undignified. (#2, #3)
Dignified, despite giving up part of their own lives
Many informal caregivers described the impact of caring for their loved one in the last phase of life. The experience could be physically draining and emotionally tough; sometimes their lives had become ‘small’, at least temporarily. Being able to provide good care still remained important for the sake of their dignity.
You know, when I think about it—”Did I fall short in terms of care?”—I don’t think so. I did enough.... We did everything we could. Did you fall short? I think I had to give up a lot of my private life. What is dignity, then? You’re only caring and caring. You’re not thinking about where you are.... Yes, consciously you’re not really aware of those things. (#20)
Dividing the care and attention for the patient among family members was an effective way for informal caregivers to find a balance and continue providing care to the patient, and thereby maintain their own dignity.
Motives for the importance of family care
Informal caregivers cited several reasons why providing the care themselves was important to their own dignity. For example, they saw caregiving as part of maintaining a good relationship with the patient (see #10 below). Others emphasized that family care was important for the patient or the patient’s dignity (#8). Caregivers also stressed small but valuable aspects of family caregiving, such as having time for good conversations and reciting religious phrases for the patient (#8). For many Islamic caregivers, caring for family was also part of their religion. Surinamese caregivers did not mention a similar obligation; several also reported not being religious.
That we’re there for each other. I’m there for him. What if it was the other way around? Then he’d be there for me. So I don’t need any home care. I do it myself. (#10)
I said, “No, I don’t need [extra help]. I’ll take care of my husband myself.” Because my husband, psychologically—if an outsider were to come into our home—I thought he wouldn’t feel good about it, because my husband ... is a dignified man. [He would say,] “Someone else taking care of me—that’s a no-go.” (#8)
My kids always said, “Mom, that our dad was psychologically healthy was all thanks to you.” Because every night, I recited beautiful things for him. (#8)
Informal caregivers also pointed out that being cared for completely by family members was especially important to first-generation migrants (their own parents). That was part of informal caregivers’ motivation to provide the care themselves. They didn’t necessarily expect their children to do the same for them:
Actually, it’s not so terrible. I’d want to go to a nursing home if I were having a hard time, so as not make it too hard for my children. We think of it that way, but the first generation doesn’t see it like that. (#6)
Dignity of the patient
In several ways, the dignity of the informal caregiver was related to the dignity of the patient. If a patient’s dignity was jeopardized by healthcare, the dignity of the caregiver was also affected. For example, one informal caregiver reported that being cared for by women rather than men was important to her mother’s dignity. When healthcare providers did not take her request seriously and she saw her mother being provided care by a man, her mother’s dignity suffered, as well as her own. In another interview, opinions of others in the community that the care being provided was not good enough damaged both the patient’s and the caregiver’s dignity simultaneously.
Caregiver dignity was influenced positively by dignified behavior on the part of the patient. For example, one caregiver reported that her husband’s dignified behavior involved having patience and surrendering to Allah’s will by praying. That dignified behavior reinforced her own caring role and made the role easier to carry out, which in turn was vital to her own dignity.
Interviewer: So you’re saying that his dignity, and his preservation of his dignity, comes from his faith?
Respondent: Yes, faith ... and his patience. I said to God, “O Lord, provide me with such patience. What is this patience, this patience?” Sometimes, at night, he couldn’t sleep, he just couldn’t sleep, and he didn’t even complain about why he couldn’t sleep. He just worshipped Allah then and prayed. And then he also prayed for me, so that also made it easy for me [to help him]. So it didn’t tire me out. (#8)
Another caregiver reported, however, that a patient’s lack of gratitude toward a healthcare professional negatively influenced her own dignity. When a care worker put extra effort into culturally personalized care, she would have considered it dignified behavior had the patient shown gratitude toward the care provider. The lack of such behavior made the informal caregiver feel undignified herself.
[The nurse] said, “I’ll cook Surinamese food with your mother. I hope she wants to help me....” But it was impossible to get [the patient] moving, [who said,] “No, I don’t feel like it, I’m not going.” Whereas that girl always puts effort into it.... And basically that makes me feel less dignified, because she just says, “No, I’m not going.” (#16)
Interaction of informal caregivers with the patient and significant others
Several caregivers said their sense of dignity was interlinked with the nature of the relational interaction between them and the patient. Gratitude from the patient strengthened their dignity and their ability to provide care; aggressive behavior or thanklessness negatively affected their dignity.
The caregivers’ own behavior toward the patients also influenced their own sense of dignity. Two caregivers reported that becoming angry at the patient had negatively affected their dignity, if only temporarily, because they judged that as failure to provide the good care that was vital to their own dignity.
Interviewer: Was there also anything that was important for your own dignity?
Respondent: I had moments when I got very irritated—also toward my mother. [Like] one time when she argued with me, and then at one point I said, “Now you have to stop whining.” You know, that’s not kind of me either.... But it’s also good to put this into perspective afterwards—to say to yourself, you’re also just a human being and of course you’ll have quarrels sometimes. (#20)
Two caregivers also mentioned dignity in relation to significant others. When asked about their dignity, they explicitly noted that showing their emotions to others about the patient’s deterioration compromised their own dignity.
I didn’t want to show [my emotions] to my children. So, when they were here, I cried in the [other] room or after they left.... I also acted like everything was normal, in terms of both my tiredness [author’s note: she acted like she wasn’t tired] and the care for my husband. I didn’t show it to them and tried to not look sad and [did] like everything was perfect. (#8)
For the same caregivers, surrendering to Allah and providing care out of love seemed a major part of both their own and the patient’s dignity. This religious perspective itself appeared to contribute to their not wanting to show their emotions or complain about the situation, as they likened the behavior of “not complaining” to surrendering to Allah.
Interviewer: And how was your own dignity during that period?
Respondent: I was internally very peaceful. And he said a thousand times a day to me, “Oh, my dear, may Allah be pleased with you.” ... Then everything was fine for me.... He was sick, bedridden, for three to four years. I didn’t complain once.... I did it out of my own will, with love. (#8)
Acknowledgment and support of the informal caretaking role by care professionals
Because providing care themselves and advocating for the patients’ needs and wishes is such a key element of caregiver dignity, it was also important for their dignity that healthcare professionals take informal caregivers seriously in that role and regard them as fully fledged partners.
Interviewer: In this whole process, is there anything that is important to your own dignity?
Respondent: I can see she’s not well and that things aren’t going as they should. [So it’s important to be] taken seriously as a designated representative of someone who can’t do or say anything about it herself. (#11)
Informal caregiver dignity appeared to be in particular jeopardy during decision-making phases at the end of life, such as about pain management or tube feeding, when differing opinions of physicians and informal caregivers with regard to such options may emerge. Informal caregivers wanted to be taken seriously in the sense that they could decide and choose what was best or most important for the patient. Caregivers viewed some responses of healthcare professionals as undignified, perceiving these as judgments about the value of the patient’s life or about the caregiver’s good intentions.
Every day they [the healthcare providers] would ask us again, “Do you want to think about it [the use of morphine]? She is in pain.” But she wasn’t, I really had the feeling she wasn’t suffering [from pain]. Of course, she had some breathing problems. But we were also there when my father died.... But the physician kept constantly saying, “Morphine, morphine, and stop the medication. Stop the tube feeding.” I thought, “Don’t you have anything else to say? We’ve already said ‘no’ several times. What are you doing in an Islamic unit? … Don’t you take me seriously as a legally designated representative? We didn’t just pick something. We really gave it thought together, as a family.” (#11)
Healthcare professionals could further preserve caregivers’ dignity by supporting their caring and advocating role. According to participants, such support includes their having complete information about the patient’s disease and prognoses, so they could know what awaits them and act accordingly for a dignified last phase of life for both patient and family. They also wished to be warmly treated when they visited or slept over. Caregivers also reported that they appreciated efforts by care professionals to support or explore a familial approach to caregiving, in which care for the patient would be shared among family members, in contrast to merely proposing a nursing home as a solution to the caregivers’ burden.
Interviewer: Was your own dignity affected during that period?
Respondent: I went to a psychologist.... They’re from another culture, you know. They say, “Let her live in a nursing home. Why are you doing this?” ... They don’t understand me.... After that, I went to a Turk.... They did a division of tasks. For example, my husband is in charge of the hospital stuff for my dad.... My daughter does the record-keeping.... In the beginning, I did all of that.... My son sleeps over three times a week. I thank him. (#6)