There were 31 participants in this study (Table 1). The majority were female (n = 28), with most being daughters of the care receivers (n = 20). The youngest caregiver was 34 years old, and the oldest was 74 years old (interquartile range: 48–58 years). The longest time spent caring was 26 years, and the shortest time was one year (interquartile range: 2.5–8 years).
Table 1
Demographic data of the study participants.
Gender (n) | Women | 28 |
Men | 3 |
Age (years) | min 34; max 74; IQR*: 48–58 |
Relation to the care receiver (n) | Daughter | 20 |
Niece | 4 |
Granddaughter | 2 |
Son | 2 |
Daughter-in-law | 1 |
Son-in-law | 1 |
Not a relative | 1 |
Years caregiving | Min 1; max 26; IQR*: 2.5–8 |
*IQR - interquartile range |
Through the data analysis, the researchers identified four thematic categories relating to the personal experiences of the participants: 1) learning caregiving through personal experience; 2) implications of caregiving on social wellbeing; 3) caregivers’ contradictory emotions regarding care delivery; and 4) addressing challenges regarding care provision.
Learning caregiving through personal experience
The informal caregivers developed a set of specific care competencies over the course of their caring practice, ranging from logic-based organization of care (e.g., segmentation of hygienic procedures – “She gets tired during the day. First, I wash her head; I wash the rest of her body the following day” G5) to nursing-care provision (e.g., experience in the management of leg ulcers) and dietary supplements (“I give her a variety of vitamins”; G2). Some focus-group participants indicated their active involvement in the adjustment of treatment:
She [the care receiver] was prescribed sticking patches [for pain management]. These had some effect, but she developed spasms […], so I decided to discontinue the treatment and removed the patch. Maybe there was an overlap of medicines? […] later, they prescribed morphine. Once her pain had subsided she no longer needed the morphine, so I stopped giving it to her. […] for Parkinson’s […] she takes two kinds of medicine - two tablets in the morning and two in the evening. On days when I notice that she is not trembling, I reduce her intake by one tablet. Then, I give her pills for dementia, for her confusion, which I cut in half [regulates the dose] (G4).
The focus-group participants reported experiencing anxiety, as a result of their relative inexperience, when interacting with existing care resources, which led to inadequate usage of these resources – “one does not know to what one is entitled - what we can get” (G1).
We […] learned too late that there are such things as [day] centers. That a bus comes and takes them [the care receivers]. They can draw and write there; they need communication (G2).
The caregivers also expressed worries regarding deficiencies in their caregiving skills, and felt that there is a need for formalized educational activities to help them address various issues that arise during caregiving.
Well, I am doing something here [providing care]. However, you do something and sometimes wonder whether you are doing it well […]. But, you cannot know everything. If, somehow, you could be instructed, could get basic training […], have someone explain it plainly to you. Maybe […] there is some kind of methodology [for providing certain types of care] […]. They [formal caregivers] could give demonstrations and say “do this” or “do that” […] (G2).
Caregiving competencies were obtained through many means. The focus-group participants indicated that experience, even if fragmented, was the most widespread means of gaining a better understanding of the care process.
You do not even know what you need, in the sense that there are many types of tools [for caregiving].
I cannot even imagine what else is needed.
Unless you have already [cared for] a person, you really do not know [what to do when providing care]. It [the caregiving] seems to be ok as it is (G4).
The discussion revealed that the participants attached a high level of significance to medical professionals’ roles in terms of providing information, advice, or tutorials concerning the pathogenetic disease process, care strategies, and the administering of specific procedures: “they showed us exercises and told us what to do” (G4). Social communication with peers also seemed to be an important source of information that increased the participants’ knowledge regarding care resources: “I only learned of it from other people” (G1).
Informal caregivers’ educational backgrounds and professional experience in the medical field seemed to have a strong effect on their care approach, which indicated that these factors could represent important considerations in regard to enhancing the organization of informal care and improving the results of nursing care.
My mother… she had a stroke three years ago. She is 82 now. So, she could not speak or walk and could not communicate. I am a speech therapist, so I began teaching her [to speak] step-by-step, one syllable after another. And now […] I can at least understand what she wants to say (G3).
You know, I am a nurse anesthetist. So, I can do infusions, if I think one is needed, or give some medication […]; maybe it is easier for me. I consult with the doctor, he gives me prescriptions, and I administer them (G5).
Implications of caregiving on social wellbeing
Providing care for older adults with mental disorders is often a permanent, 24-hour job that substantially affects the daily life of the caregiver: “I have practically no personal life” (G4). The participants emphasized that caregiving involves being on on virtually permanent standby, including during the night.
You have to listen all the time. Always be on standby (G4).
The nights were probably the hardest (G3).
Participation in the job market while performing caregiving is virtually impossible as a result of the absence of a supporting network for caregivers in Lithuania. Exclusion from the labor market has a negative effect on caregivers’ income and also shortens their work record, which will eventually have an impact on their income in the future, as the pension provided by the state depends on the years spent in the labor market.
I am delighted that I can be with my mom all the time, but I am also very sad that it is a job. It is my job. And, you know, it is hard work, exhausting. But I do not receive a salary and cannot include it on my work record (G3).
Sad, very sad […], because my years of work experience were all for nothing and… What will I get as a pension? It is ok, for now, there is my mother’s pension […] but later? What will I do? (G1).
On the other hand, some focus-group participants perceived caregiving as an escape from certain situations in their lives.
I cannot work. My employer went bankrupt, so I would not be working now, anyway (G4).
Caregivers’ contradictory emotions regarding care delivery
During discussions, the focus-group participants expressed a broad spectrum of emotions, often ambivalent, ranging from indifference - “just living, and that is it” (G5) - to highly positive or negative emotions.
I really find it hard. And I love my aunt, she is family. But, sometimes coming home … it seems … you do not want to do it [provide care] anymore. It is like that; that is my experience (G5).
The study participants frequently mentioned their love for their parents and grandparents, and that their caregiving gave them a chance to return the care they had received during their lifetimes and to strengthen existing relationships: “[…] we are pushed into some kind of circle. […]… the love for our parents does not end” (G2). Informal caregivers sometimes perceived, based on the changing dynamics of their relationship, caring for their loved ones as evidence of their maturity.
When a person you are close to, your mother, who was an example to you during your lifetime - she lived an active life, did such miraculous things … I thought, “God,, I could never do the things she did” … And then she became disabled. Then, I felt pity for myself; that it was over; I was no longer a child. Sometimes I would ask her, “Do you know who I am?” She would say – “Yes, I know … you are my daughter.” Am I your daughter or am I your mommy now? (G2).
The study participants had a common perception that they were of absolute importance in the lives of the care receivers – “I am her only contact with the outside world in every regard” (G3). Sometimes, a sense of complete competence or even omnipotence in relation to care was expressed: “I cannot trust the care of my mom to anyone, because I know that nobody will look after her better than I do” (G5). On the other hand, the focus-group participants also highlighted negative feelings, such as isolation, loneliness, and anger.
My emotions … they change suddenly … I become angry. Sometimes, I feel unwillingness and apathy for no reason at all (G2).
The participants often expressed a sense of suffering as a result of being completely restricted, or even trapped, by their situation: “Like a prisoner; actually, my mother’s hostage” (G4). Some focus-group participants reflected on their own lives, which were dominated by, or even neglected to maintain, their caregiving role.
For example, I cannot work normally. I cannot go to work, I have lost my income because I cannot leave her. […] it is not normal. From a moral point of view, yes, it [providing care] is a child’s obligation … but she is 65 and I am 42 […]. But that is life; you have to make sacrifices (G5).
Such emotional tensions relating to caregiving could also lead to a deterioration of mental and physical health. Holding responsibility for the care often means that caregivers’ individual needs are neglected, and this can also be accompanied by feelings of anxiety and blame that not everything possible regarding caregiving is being done.
You become furious for a moment, but then you yell and yell […]. I unload my emotions because they [doctors] told me to. You should not keep them inside, because your blood pressure will go up to 200. My cardiologist said so – “you can yell.” (G2).
When she had to go to a nursing hospital, she [the care receiver] said that we [the caregivers] wanted to get rid of her (G2).
Caregiving is highly demanding and causes one to reallocate priorities relating to personal and family life, which can lead to conflicts and a deterioration of family relationships.
My husband feels very angry and annoyed about the situation, but […], who else should provide care, if not the relatives […] (G5).
Addressing challenges regarding care provision
The focus-group participants shared their experiences regarding coping with the challenges of caregiving. Adopting a positive attitude towards the situation, securing temporary respite, finding time for communication with other people, and ensuring one’s privacy were reported to be essential measures for the prevention of burnout.
It is a must, a must, that someone substitutes for you for some time on at least one day a week, Saturday or Sunday, or else you will become sick (G5).
On the other hand, study participants also emphasized the importance of support from family members, and from health- and social-care professionals.
My husband and I provide care together, so it does not become too difficult. We let each other take time off when needed. But, if you are alone, then it is very hard (G5).
The nurse really helped by giving advice […]. When you get such support, how can I put it? You feel better (G2).
When discussing means of enduring the complex situations associated with caregiving, the participants emphasized the need for professional help from psychologists. Furthermore, it also seemed that support groups could exert a positive influence.
My opinion now is that if you see a person who is providing care for a person with disabilities […] who needs special needs or nursing, you must also ask about the condition of the relatives. The people who are living in the same home, and who are also caregivers. “How are you?” […] “Do you need any help?” […] yes, we do find other caregivers [to substitute for a time], we struggle through […]. But our psychological life […]; we should visit a psychologist or somebody (G2).
I think everyone needs a psychologist. And I probably do, too (G5).
After sitting here [in the focus-group discussion] and listening … Jesus, thank God that I am not the only one living like this (G1).
We talked, we complained [during the focus-group discussion]. No one else would have understood (G5).
Caregivers emphasized the difficulties they experienced when communicating with professionals from the health-care system. Informal caregiving has not been integrated into the Lithuanian health-care system, and is somewhat disregarded – the focus-group participants did not feel like members of the health- and social-care network, but rather as isolated individuals fighting against the network. They mentioned several hurtful interactions with the health-care system.
If such a situation occurs [the need for hospital treatment], we go to the emergency department. And there … it is scary. You are left alone; you are completely alone and the situation there is terrible for you […] because the attitude is outrageous. […] And if you show a little bit of knowledge and stand up for the person [the care receiver], you immediately receive negative comments and questions: “maybe you are a doctor, since you are asking all these questions?” Specifically, in my case … I usually say, “I am not a medic; however, I nurse my two parents, so I need to be somewhat interested in medicine.” […] If you find a humane doctor, only then will you find some compromise (G2).
I am feeling tired because I have not had a vacation […] for nine years; not a single day off. Really. … She [the care receiver] was admitted to the hospital and the doctor [said]: “you just want to have a vacation.” No support, just negative comments … (G5).