We interviewed 20 informal caregivers, of whom nine had a Turkish background, four a Moroccan background, three a African-Surinamese background, and four a South-Asian-Surinamese background. Most of them were women, and many of them were responsible for a large part of the care for their loved one. Among the male respondents, only the partners took care of their loved ones themselves; sons didn’t provide care themselves, but they were the primary contact for care.
The following aspects contributed to the informal caregiver’s dignity: (1) dignity as providing good care, (2) 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. Informal caregivers also described, despite giving up a part of their lives, providing care was part of their dignity; and they had several relational motives to give care to the patient.
For all informal caregivers, providing good care for their loved one was a prominent aspect of their own dignity. Thus, for many, ensuring the patient received good and dignified care from healthcare professionals and that the patient’s choices and preferences were respected was important for the informal caregivers’ dignity.
For many informal caregivers, their dignity was also related to providing good care to the patient, either by themselves or with family members. Admitting the patient to a nursing home was especially seen as undignified for them. Even when care handover was regarded as necessary, some informal caregivers still felt they had “discarded” the patient, and this feeling influenced their dignity.
Although informal caregivers put a lot of effort into taking care of their loved one, they sometimes felt others might not feel it was enough effort. If others in the community did not see the amount of effort informal caregivers put into taking care of their loved one, or lacked knowledge about the disease and thus wrongly judged the amount of care they would need, this opinion negatively influenced informal caregivers’ dignity.
Motives for the importance of family care
Informal caregivers had several reasons for why providing care for the patients themselves was important for their dignity. For example, they saw caregiving as part of maintaining a good relationship with the patient (see #10 below). Others mentioned that family care was important for the patient or the patient’s dignity (see #8). Informal caregivers also stressed small but valuable aspects of family caregiving, such as having time for good conversations and reciting religious phrases for the patient (see #8). For many Islamic informal caregivers, caring for family was also part of their religion; Surinamese informal caregivers did not mention a similar obligation. Several Surinamese informal caregivers also said they were not religious.
That we are there for each other. I am there for him. Suppose it would be the other way around; then he will be there for me. So, I don’t need home care. I do it myself. #10
I said: “No, I don’t need (extra help). I will take care of my husband myself.” Because my husband, psychologically, when an outsider came to our home, I thought that he would not feel good about it, because my husband ... is a dignified man. (He would say): “When someone else takes care of me, it is a no-go.” #8
My kids always said, “Mum, that our dad was psychologically well was all thanks to you.” Because every night, I recited beautiful things for him. #8
Informal caregivers also mentioned that being cared for completely by family members was especially important for first-generation migrants (the parents of the informal caregiver); this was partly informal caregivers’ motive to give care themselves. They didn’t necessarily expected their children to do the same for them:
Actually, it is not so terrible. I would want to go to a nursing home when I have a hard time, in order to not make it too hard for my children. We think about it this way, but the first generation doesn’t think about 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. When the dignity of the patient was impaired by health care, the dignity of the informal caregiver was also impaired. For example, an informal caregiver mentioned being cared for by women instead of men was important for her mother’s dignity. When healthcare providers did not take her request seriously and she saw her mother being cared for by a man, her mother’s dignity as well as her own suffered. In another interview, the opinions of others in the community that the given care was not good enough simultaneously damaged both the patient’s and the caregiver’s dignity.
Also, the informal caregiver’s dignity was influenced by the dignified behavior of the patient. When the informal caregiver viewed the patient as behaving in a dignified manner, for example, surrendering to Allah’s will by not complaining and by praying, he or she felt strengthened, thereby strengthening their own dignity and their caring role.
And his patience, I said to God, “O Lord, provide me with such patience. What is this patience, this patience?” Sometimes, in the night, he couldn’t sleep, he just couldn’t sleep, and he didn’t even complain about why he couldn’t sleep. He then just worshipped Allah and prayed. And then he also prayed for me, and then it was also easy for me (to help him). Therefore, I didn’t get tired from it. #8
For another informal caregiver, the patient’s lack of gratitude toward the healthcare professional negatively influenced the caregiver’s dignity. The care provider wanted to give culturally personalized care and showing thankfulness by the patient would have been dignified behavior.
She (the nurse) said, “I will cook Surinamese with your mother. I hope that she wants to help me. […]” It was impossible to get her moving. No movement. “No, I don’t feel like it, I am not going,” [the patient said], while that girl always puts effort in it… And actually, then you feel less dignified, because she just, “No, I am not going.” #16
Their interaction with the patient and significant others
Several informal caregivers said the nature of the relational interaction between them and the patient was related to their dignity. Gratitude from the patient strengthened their dignity and their ability to provide care; aggressive behavior or thanklessness negatively influenced their dignity.
Their own behavior toward the patients also influenced their own dignity. Two relatives described becoming mad at the patient as influencing their own dignity negatively, even if only temporarily.
“And I’ve had moments that I became very irritated— also towards my mother. That she at one moment argued with me. And then I at one point said, “Now you have to stop whining.” You know, that is also not kind of me. […] It is also good to put this into perspective afterwards—to say, you are also just a person and of course you will have quarrels sometimes. #20
Two informal caregivers explicitly mentioned that showing their emotions to others regarding the patient’s deterioration impaired 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 had left. [...] I also acted like everything was normal, as well my tiredness [she acted like she wasn’t tired] as the care for my husband, I didn’t show it to them and tried to not look sad and like everything was perfect. #8
Surrendering to Allah and providing care out of love seemed an important part of the dignity of these informal caregivers and patients. This religious perspective seems to be part of the conviction to not show your emotions or complain about the situation.
But 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 has been sick, lying down, for three to four years. I did not complain once. […] I did it out of own will, with love.” #8
Acknowledgment and support of their caretaking role by care professionals.
The dignity of informal caregivers was also related to being taken seriously by healthcare professionals in their advocating role for the needs and wishes of the patient, and regarding them as fully fledged partners. This seems to become particularly important during decision-making at the end of life, such as pain management and tube feeding, when different opinions between physicians and informal caregivers regarding these choices become apparent. Informal caregivers want to be taken seriously in the sense that they want what is best for the patient, and they choose those options that they think are most important for the patient. Informal caregivers viewed some responses of healthcare professionals as undignified, because they felt they were judgments about the value of the patient’s life or about the caregiver’s good intentions.
Every day they (the healthcare providers) asked us again, “Do you want to think about it? (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 has some breathing problems. But we were also there when my father died […] But the physician constantly said, “Morphine, morphine, and stop with the medication. Stop tube feeding.” I thought, “Do you not have anything else to say?” We already said “no” a couple of times. They don’t really take into account (what is important for them) [..]I think, “What are you doing at an Islamic department?” #11
Situations that informal caregivers saw as positively influencing their dignity were to be completely informed by healthcare professionals about the patient’s disease and prognosis to know what awaits them and to act accordingly for a dignified last phase of life for the patient and the family, and to be warmly welcomed/treated when they visit or sleep over. Informal caregivers also mentioned that they appreciate that care providers initially support a familial approach: to divide care among family members.
I have been to a psychologist […] They are from another culture, you know. They say, “Let her be 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 concerned with the hospital stuff of my dad […] My daughter is concerned with administration[…] In the beginning, I did all of that […] My son sleeps over three times a week. I thank him. #6