Introduction

Chronic kidney disease (CKD) has become a serious public health problem worldwide1,2. The annual incidence rate of end-stage renal disease (ESRD) in China is 2%, which far exceeds the population growth rate (1.1%)3. Maintenance Hemodialysis (MHD) remains the preferred kidney replacement therapy solution for patients with ESRD, having extensive applications in clinical practice. MHD patients have the characteristics of a long disease cycle, frequent and regular dialysis and multiple dialysis complications. It is reported that currently near 850,809 patients receive MHD in China4.The nursing of such a large group of MHD patients has been the focus and hot topic in almost all domains of the society.

Family caregivers are usually defined as family members who are relatives to patients and undertake the main care tasks. They not only need to fulfil the requirements of patients in daily life and medical rehabilitation, but also provide psychological and emotional support for them5. This puts an enormous strain on the caregiver in the financial and social aspects, and also exerts serious adverse effects on their physical and mental health and quality of life. Even worse, the caregiver may become a potential patient6,7.

Archbold et al.8 proposed the concept of care preparedness in 1990 and defined it as meeting physical and psychological needs of care recipients, providing them with care and responding to emergencies when performing caring tasks. Research on care preparedness started early in foreign countries and later in China. The research contents are mainly concepts, measurement tools, research progress and so on. The scope of research is also gradually expanding. A number of studies have shown that the overall level of care preparedness of caregivers needs to be improved9,10,11. According to previous studies on care preparedness of family caregivers of stroke, ICU and chronic heart failure patients, the care preparedness is intimately linked to their nursing competence12, negative emotions13, and health-promoting lifestyle14, etc.

Based on the literature review, this research proposes the weakness of the previous studies. There is less research on the relationship of care preparedness with the positive aspects of caregiving of the caregivers themselves (subjective feelings generated during the caring process, such as satisfaction, enjoyment, happiness and honor). In addition, a majority of domestic and foreign researchers focus mainly on the nursing burden6,7, quality of life5 and negative emotions15 of family caregivers of MHD patients currently. Little is known about their care preparedness for caregiving, and the factors affecting the care preparedness have not been identified.

The Crisis of Physical Illness Model16 suggests that serious physical illness (e.g., kidney failure) or injury can be considered a crisis. Family members and friends can also be affected by a crisis. A cognitive appraisal of the meaning of crisis suggests basic adaptive tasks and coping strategies. The family caregivers of the patient are also faced with similar adaptive tasks and coping strategies, such as maintaining appropriate relationships with healthcare professionals, managing their own uneasiness and remaining hopeful, maintaining family harmony and friendships with friends, and making appropriate preparations for an uncertain future. Within the perspective of the Crisis of Physical Illness Model, this study takes the care preparedness of family caregivers of MHD patients as an adaptive task. Exploring the current state of care preparedness and its influencing factors is equally feasible and actionable in this population.

In summary, the current care preparedness level of family caregivers of MHD patients was investigated in this study, and the influencing factors were analyzed in this study, in order to provide a basis for clinical targeted intervention guidance.

Methods

Participants and sampling

A descriptive cross-sectional survey was conducted to collect data from family caregivers of MHD patients, following the guidelines outlined in the STROBE statement. All methods were performed in accordance with the relevant guidelines and regulations. The study enrolled a total of 237 family caregivers of MHD patients selected from hemodialysis rooms of two tertiary hospitals in Wuhan, Hubei Province, China, between May to August 2020. The inclusion criteria for participants were as follows: ① caregivers aged over 18 and caring for patients with MHD for mother than 3 months;② relatives of the patient, who were aged over 18, had cared for the patient for more than 1 month, and undertook most nursing tasks of the patient or spent the most time in nursing the patient; ③ caregivers who were conscious and able to independently complete the questionnaire or with the assistance of the researcher; ④ caregivers who were willing to participate in the survey and signed the informed consent. The exclusion criteria included: ① people who receive payment, such as caregivers or nannies; ② participants with prior cognitive impairment, mental or psychological diseases; ③ participants with severe heart, liver, kidney, lung, and brain diseases, etc.; ④ participants having had received psychological counseling before orin three months prior to this study. A total of 245 questionnaires submitted by caregivers were received, and 237 were valid, with an effective recovery rate of 96.7%.

According to the commonly used quantitative study sample size estimation method in nursing research, this study adopted multiple method to estimate sample size17. This method considered that the sample size was related to the number of independent variables, which was usually taken from 5 to 10 times the number of variables. In this study, there were 9 items of the general data questionnaire, 8 items of Care Preparedness Scale, 2 dimensions of Positive Aspects of Caregiving, and a total of 19 independent variables. Taking into account the possibility of 20% invalid questionnaires, the desired sample size would be 114–228 participants. Thus, the inclusion of 237 participants in the study exceeds the required sample size, satisfying the estimation requirements.

Measurement

Demographics survey

The demographics survey addressed the gender, age, marital status, occupational status, education level, household per capita income monthly, the total time to take care of patients, daily nursing time, and the current living conditions of respondents. Meanwhile, whether there were co-caregivers or the respondents had chronic diseases were also examined.

Care preparedness scale (CPS)

The CPS was developed by Archbold et al.8 in 1990, and sinicized by Liu Yanjin et al.18 in 2016. It was primarily used to assess a caregiver's preparedness for caring for a patient. The CPS has 8 items, each of which is given a score ranging from 0 (very inconsistent) to 4 (very consistent) points according to the 5-point Likert scale method. The total score is from 0 to 32 points. A higher score indicates a higher level of care preparedness of the caregivers. The CPS has been widely used among caregivers of Chinese chronic patients and has demonstrated effectiveness and reliability18. In this study, the Cronbach's alpha coefficient for the CPS was calculated to be 0.917, indicating a good level of internal consistency.

Positive aspects of caregiving (PAC)

This scale was invented by Tarlow et al.19 in 2004, and sinicized by Zhang Rui et al.20 in 2007. It is mainly used for the assessment of positive aspects of caregiving of family caregivers. It consists of 9 items that are intended to measure two distinct dimensions of PAC: self-affirmation and outlook on life. Each item is answered with a score range of 1 (strongly disagree) to 5 (strongly agree) points according to the 5-point Likert 5-level scale method. The total score ranges from 9 to 45 points. A higher score implies that the caregiver think more positively. The PAC has been widely used among caregivers of Chinese chronic patients and has demonstrated effectiveness and reliability20. In this study, the Cronbach's alpha coefficient for the PAC was calculated to be 0.903, indicating a good level of internal consistency.

Survey methods

Prior to data collection, the researchers received training to ensure they were familiar with the standardized measurement procedures and criteria for properly completed questionnaires. Participants were provided with a link to the questionnaire through WeChat, a popular communication software in China. The researcher connected with the participants on WeChat (participants were added to the WeChat contact list), so that the participants could submit both the link and their responses directly through WeChat. The purpose of the study, informed consent process, and instructions for completing the questionnaire were explained on the first page. The caregivers submitted the questionnaire after completing it independently or under the guidance of the researcher. The researcher promptly checked the submitted questionnaires and addressed any incomplete ones on the spot. The implementation method was that the researcher immediately reviewed the questionnaire after receiving a prompt that the participant had completed the questionnaire. The researcher ensured that the questionnaire was complete and correctly submitted by the participant. Each participant was allowed to respond only once, and questionnaires with an answer time of less than 180 s or with identical choices were considered invalid. Participants were assured that their data would remain anonymous and confidential. The collected data were stored securely on a disk, accessible only to the study researchers, and strict confidentiality was maintained. After the completion of the questionnaire, the researcher checked for any omissions and collected the questionnaires.

Statistical methods

Statistical analysis was made by using SPSS21.0. General data of the study subjects were described with percent frequency(%), while the positive aspects of caregiving score, total care preparedness score and score per item were represented with mean ± standard deviation (\({\overline{\text{x}}}\) ± s). Data conformed to normal distribution. Therefore, care preparedness scores of MHD caregivers with different characteristics were compared using the two sample t-test or variance analysis. The influencing factors of care preparedness of family caregivers were investigated by multiple linear regression analysis. All P values are two-sided in this study. A P value smaller than 0.05 indicates a significant difference.

Ethical approval

Before being permitted to participate in the study, participants were informed of the purpose of the research, the meaning and data security. In addition, participation was voluntary and anonymous, they were informed of their rights and responsibilities and that they had the right to withdraw from participation at any time. This study was approved by the ethics committee of Renmin Hospital of Wuhan University (No: WDRY2022-K192). All participants gave their voluntary written informed consent prior to study participation.

Results

Participants in this study were aged 18 to 76, averaging 55.30 ± 13.90 years. Most of the family caregivers were females. Household per capita income monthly was < 3000 yuan for 100 participants, 3000–5000 yuan for 71 participants, and > 5000 yuan for 66 participants. Daily nursing time was ≤ 4 h in 67 participants, 5–12 h in 110 participants, and ≥ 13 h in 60 participants. Among 237 participants, 77 had no co-caregivers, and 139 lived with patients. Other general information is shown in Table 1.

Table 1 Comparing care preparedness scores of caregivers of MHD patients with different characteristics (n = 237).
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Care preparedness and positive aspects of caregiving scores of family caregivers of MHD patients

The total score of care preparedness of family caregivers was 19.05 ± 5.64 points. The item scored the highest was coping with the stress of caring for patients [(2.68 ± 0.94) points], followed successively by obtaining help and information resources from medical systems [(2.42 ± 1.22) points], understanding patient needs and developing relevant services [(2.40 ± 1.28) points], addressing and handling some emergencies [(2.38 ± 1.06) points], holistic care readiness [(2.37 ± 1.25) points], providing mutually satisfactory care [(2.35 ± 1.29) points], nursing patient physiological needs [(2.34 ± 1.37) points] and nursing patient emotional needs [(2.07 ± 1.21) points]. The positive aspects of caregiving score of family caregivers was (31.28 ± 7.28) points.

Comparing care preparedness scores of caregivers of MHD patients with different characteristics

The univariate analysis involved the gender, age, marital status, occupational status, educational level, total time of caring for patients, and whether the caregiver had chronic illness. The differences of care preparedness scores were statistically significant (P < 0.05). Details are shown in Table 1.

Relationship between care preparedness and positive aspects of caregiving of family caregivers of MHD patients

The Pearson correlation analysis results showed a significant positive correlation between care preparedness and positive aspects of caregiving (r = 0.690, P = 0.000).

Multivariate analysis of care preparedness of family caregivers of MHD patients

Taking positive aspects of caregiving as an independent variable, univariate analysis results suggested that 7 variables had statistical differences. Therefore, a multiple linear regression analysis was conducted on these 7factors with care preparedness as the dependent variable. It was found that the total nursing time(< 2 years = 0;2–3 years = 1; > 3 years = 2),whether to have a chronic disease (none = 0; ≥ 1kind = 1) and positive aspects of caregiving (raw data entry) were the main factors influencing their care preparedness (all P < 0.05) (Table 2).

Table 2 Multivariate analysis of care preparedness of family caregivers of MHD patients (n = 237).
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Discussion

A high care preparedness level can improve not only their own physical and mental health and quality of life, but also the quality of patient nursing and disease outcomes. In this study, the care preparedness scores of family caregivers with MHD patients are higher than the survey results of caregivers with enterostomy12 and ICU patients21. It shows an intermediate level of care pareparedness in this population. There may be several reasons for that. Firstly, caregivers of MHD patients feel highly uncertain about the disease due to its complexity and uniqueness22. In addition, 57.38% of caregivers in this survey suffer chronic diseases themselves and lack of professional knowledge and skills. These factors affect their care preparedness to a certain extent. Secondly, 70.04% of caregivers are unemployed and thus may bear more intense financial stress. According to the study of Gitlin et al.23, the greater the financial pressure on the caregiver, the lower the care preparedness. Thirdly, Henriksson et al.24 found that caregivers who lived with patients have a higher care preparedness level than those who did not live with patients. In this survey, 139 (58.65%) of caregivers live with patients, so they can better understand their physiological and emotional needs and handle emergencies. Fourthly, family caregivers have attracted the attention of and received increasing support from families, medical institutions and society in recent years. Good social support can enhance caregivers’ resilience to stress and improve their problem-solving skills. Besides, high-quality social support is an important protective factor of health-promoting lifestyles, which can improve care preparedness14.

It is also found in this survey that the caregivers who have spent more than 3 years caring for patients have a higher care preparedness level. The reason may be that the caring knowledge and experience accumulated by caregivers during the nursing process12 enables them to undertake less psychological pressure, quickly adapt to their caregiving role, and timely make corresponding interventions when the patient's condition changes. Besides, MHD is a highly specialized and complex disease with many complications, so it takes a long time to master its nursing knowledge and skills. This may account for the finding that caregivers who have cared for MHD patients for less than 3 years have a lower care preparedness level. Therefore, in order to improve the care preparedness level of caregivers, it is suggested that caregivers should receive individualized and targeted training on relevant knowledge and skills in stages according to the length of caring time.

The study results indicate that caregivers with chronic diseases have a relatively low level of care preparedness. There may be two reasons for that. On the one hand, the caregivers with chronic diseases tend to experience more nursing burden due to their poor health status6. However, the nursing burden is significantly negatively associated with care preparedness12. Increased nursing burden worsens the physical health of the caregivers, which in turn adds to their nursing burden. As a result, a vicious circle forms. On the other hand, in-depth analysis of the general data of 136 caregivers with chronic disease suggests that 62 (87.3%) cases are above 61 years old, 70 (74.4%) cases are unmarried, divorced, or widowed, 62 (63.2%)cases do not live with patients, and the education level of 60 (62.5%) cases is junior high school or below. These caregivers have relatively poor physical health, more negative psychological emotions, inconvenient nursing, and inadequate nursing knowledge and skills. That may be the reason for their lower level of care preparedness. Therefore, more attention should be paid to the health of family caregivers. For caregivers with chronic diseases, other family members should be encouraged to actively participate in the nursing of the patient to reduce their burden and improve their care preparedness. In addition, the reason why caregivers with chronic diseases have a low level of care preparedness should be analyzed in depth based on their general demographic data, and more targeted and personalized intervention programs should be implemented to further improve their care preparedness.

Lawton et al.25 proposed a two-factor theoretical model of caring feelings, arguing that caregivers do not always have negative experiences but also have positive experiences in the process of caring. This positive experience is called a positive aspects of caregiving, which refers to the subjective feelings generated by the caregivers during the nursing process, such as satisfaction, enjoyment, happiness, and honor. According to Table 2, positive aspects of caregiving influence the care preparedness level of family caregivers of MHD patients. Specifically, the more highly positive aspects of caregiving of the caregiver’s, the higher the care preparedness level. The reason may be that caregivers with highly positive aspects of caregiving will take the initiative to seek for help and information from the medical system, actively respond to the pressure and emergency situations in the nursing process, understand and try to meet the physical and emotional needs of patients. In this process, caregivers affirm their own value and significance, and their care preparedness level is there by enhanced. Adequate care preparedness, good mental and physical health, sufficient nursing experience, knowledge and skills, great resilience to stress, a sense of benefiting from disease, and the strong ability to seek medical-related information and resources14,26 enable the caregivers to think more positively in the nursing process, which further improves their care preparedness level. Consequently, a virtuous cycle is generated. Hence, for the aim of strengthening the care preparedness of caregivers, great importance should be attached to the emotional changes of family caregivers, and measures should be taken to induce their positive emotions, such as cognitive behavior intervention, psychological education, experiential care exchanges, etc. These approaches can help them recognize stress correctly and positively, provide them with more medical resources and social support, and increase their nursing knowledge and skills. As a result, caregivers can obtain more positive nursing experiences.

Strengths

Situational leadership theory believes that individual care preparedness is dynamic27. Dynamic evaluation of caregivers’ care preparedness can provide reference for follow-up nursing and intervention of MHD patients, and may have a positive impact on the quality of care of patients. At the same time, this study also find a close positive correlation between care preparedness and positive aspects of caregiving. This study further enriches the research on family caregivers of MHD patients and provides reference for other researchers.

Limitations

Notwithstanding the notable outcomes of this investigation, it is imperative to acknowledge several constraints that should be taken into account.

Firstly, the data collection was limited to two tertiary hospitals in Wuhan, may limiting the generalizability of the results to other geographical areas within China. Conducting multi-center studies with larger sample sizes would help to enhance the generalizability of the results. Future research should aim to include a more diverse sample from multiple regions across China.

Secondly, this study has only discussed the effect of some general information and positive aspects of caregiving on their care preparedness. Further research should employ longitudinal designs and investigate additional variables to gain a more comprehensive understanding of the care preparedness of family caregivers. Long-term follow-up studies would provide valuable insights into the dynamic nature of care preparedness in this population.

Thirdly, it is noteworthy that the present investigation was conducted solely in China, and such, one must exercise prudence when extrapolating the findings to other nations, given the potential cultural variances between China and the Western context. Consequently, it would be advantageous to corroborate the outcomes of this study in family caregivers cohorts from diverse nations, while also acknowledging the cultural heterogeneity, in forthcoming research efforts.

Conclusion

In conclusion, the care preparedness of family caregivers of MHD patients remains to be continuously improved. Meanwhile, medical staff should emphasize the important role of total nursing time, whether the caregiver has a chronic disease, and positive aspects of caregiving in improving care preparedness in this population.

To improve care preparedness of caregivers, medical staff can provide targeted support and guidance for caregivers according to the influencing factors, such as implementing group psychological education, strengthening the training, offering social support, remote intervention (including family caregivers’ education through the media), and so on28,29. Meanwhile, caregivers should be evaluated dynamically, and information and emotional support should be provided for them30.