A quantitative, cross-sectional, questionnaire-based design was used in this study to (a) investigate the caregiving needs of parents of infants and toddlers with FC and (b) the influencing factors of their needs. The study was conducted and reported according to the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) checklist (Supplementary File S1).

Parents of infants and toddlers who visited the outpatient department of the Children's Medical Center of Jiangsu Province were recruited. Convenience sampling was performed, with the following criteria: inclusion criteria for children (a) Were of Chinese nationality; (b) Age ranged from 28 days to 3 years old; (c) Met the Rome IV criteria of FC; Inclusion criteria for parents: (a) Were able to speak Mandarin, understood the contents of the questionnaire, and clearly expressed personal opinions; (b) Undertook the main task of taking care of the children, and took care of the children for the longest time per day; (c) Aged between 18 and 55; (d) Were willing to participate and signed consent.

According to Kendall's (25) experience and method of multivariate linear regression sample content estimation, the sample size should be 10–20 times the number of independent variables. There were 19 independent variables in this study, combined with the effective recovery rate of a presurvey questionnaire, and considering 10% sample loss, the sample size was finally determined to be 237 cases.

Entered the raw data into Microsoft Excel (2010 version) and SPSS 26.0, and double-checked the accuracy of the data. After screening for eligibility and completeness of responses as described earlier, the numerical variables’ normality distribution was established using descriptive statistics, graphic analysis, and the P–P test. Quantitative data were described with means, standard deviations, medians, and ranges; frequencies and percentages were used to describe categorical variables. Independent-sample t-tests or one-way analysis of variance were used to explore the differences between groups. All statistical analyses were performed with SPSS. Statistical significance was defined as a p < 0.05.

Two hundred and thirty-seven participants were invited to participate and 235 responded. After additional screening for the usability of data described earlier, responses from 211 participants were included in the final analysis, yielding a response rate of 89.03%. Their demographic characteristics were summarized in Table 2. Among 211 families, 150 (71.09%) had others to help take care of their children, helpers ranging from one to four. There were 142 families with only one child, while the other 69 had two or more children.

For 211 groups of parents, the vast majority (n = 187, 88.7%) expressed need or great need of help from the professionals, and a small number (n = 24, 11.3%) indicated that they don't care or don't want help. Almost all parents said they had received help from family members previously, while 112 groups (53.08%) had received help from friends, colleagues, or neighbors, and only 44 (20.85%) said they had received help from medical staff. Analysis via the p–p indicated the total score and scores for each item were close to normally distributed, so we chose parameter test to analyze the data. The average total score for caregiving needs was 67.86 ± 9.96 (range, 19–95 points). Generally, parents had a moderate level of needs.

As shown in Table 3, the dimension with the highest score was information needs with 3.87 (SD: 0.69), followed by the dimension of health needs with 3.74 (SD: 0.82), and the lowest score is the dimension of psychological needs with 3.15 (SD: 0.87). The five items with the highest score were mainly distributed in the dimension of information needs and health needs. The information needs included constipation cause introduction, self-assessment method guidance, and diet and nutrition guidance, and health needs included defecation difficulty management and intestinal movement promotion guidance, with an average score from 4.01 to 4.43 (Table 4).

The linear regression results among nursing needs and socio-demographic variables.

Demographic and disease-related data were used as independent variables, and questionnaire scores were used as dependent variables, independent sample T-test, and one-way ANOVA. The results showed that there were statistically significant differences in parental education, place of residence, age of children, duration, frequency, the difficulty of defecation, and fecal traits in nursing needs (p < 0.05). LSD multiple tests was used to further pally compare the multiple classification variables.

It was found that the mothers with college or undergraduate education, postgraduate education or above had higher scores than those with high school education or below (p < 0.05). Those fathers who had a college education or undergraduate education had higher scores than those who had high school or technical secondary education (p = 0.021), and higher than fathers with graduate education or above (p = 0.048). The scores of parental nursing needs of children with defecation intervals of 6–7 days were higher than those with 4–5 days per time (p = 0.000). At the same time, it was higher than those over 2 times/week (p = 0.004), and those beyond 7 days had the highest score of parental nursing needs, and the difference was statistically significant compared with other groups (p < 0.05). In terms of defecation difficulty, the score of severe defecation difficulty was the highest, and the difference was statistically significant (p < 0.05). Meanwhile, the score of moderate defecation difficulty was higher than that of mild (p < 0.05). AS for stool trait, parents of children with type I had the highest score, there was statistically significant compared with other groups (p < 0.001), and scores of type II were higher than those of type III, the difference was statistically significant (p < 0.001), but there was no statistically significant between type II and IV.

When analyzed by parental nursing needs score as the dependent variable, parental education level, place of residence, age of children, defecation interval, defecation difficulty, and stool traits were statistically significant (p < 0.05), by contrast, no significant differences were found in the age of parents, occupation, monthly income, helper, number of children, gender of children, defecation time, abdominal distension (p > 0.05). Taking total score as the dependent variable, area, parental education level, place of residence, age of children, defecation interval, defecation difficulty, and stool traits as an independent variable. Dummy variables were set for the above variables, with education status as middle school, defecation interval >2 times/week, stool trait as type IV or above, and no defecation difficulty as the reference variables (Table 5). The results showed that residence and stool traits were the main influencing factors for care needs (Table 6).

Totally 88.7% of the parents hoped or very much hoped to receive support, but only 20.85% said they had received help from medical personnel, indicating the existence of unmet care needs, and parents urgently needed the support from medical personnel. Research by Thompson (25) also showed that parents of children with FC had unmet needs for information, validation, and support, which is consistent with our study. In all dimensions, the score of information needs was the highest, mainly including disease-related knowledge and medication management. The reason may be that although clinicians can easily obtain reliable and high-quality evidence about childhood constipation, parents lack the same access, thus health care providers have become a reliable source of information. Besides, a study has pointed out that parents typically seek help from the healthcare system after living with their child's symptoms for months or years (26). Even after receiving an FC diagnosis, there is persistent parental ambiguity about the cause of the child's symptoms (27). Therefore, professional guidance is urgently needed after obtaining a diagnosis of the disease. In recent years, social media has become a source of health information for parents (28). However, confusion and misunderstanding among parents appeared with the application of professional vocabulary and the complexity of information (29, 30), in consequence, healthcare professionals were asked to verify the information on social media (31). Usually, Parents regard meeting their support and information needs as a turning point to rekindle hope and enhance confidence (23). Then, exploring multiple channels to meet the information needs of family members will never be outdated.

Our research demonstrated that psychological needs were lower than other needs, but previous studies (23, 32) noted that shame, embarrassment, and guilt were common obstacles faced by parents when providing medical care to children with FC. Probably due to the popularity of modern health perceptions, parents are more concerned about disease progression, symptom control, and complication prevention. In addition, the lack of awareness of the relationship between illness and negative emotions may be another reason for parents' neglect of psychological needs. Except for the parents themselves, a previous study (33) found that parents' experiences with FC children were often misunderstood by healthcare professionals. The study of Borowitz (34) also showed the same results. The low psychological needs of parents and the underestimation of the psychological needs of medical staff are both reminding us that this is a phenomenon worth thinking about. On the one hand, the positive emotions of parents are very important for the management of constipation in children (35). On the other hand, double neglect of psychological problems is bad for communication between parents and healthcare providers. This reminds us that it is worthwhile to devote attention to their psychological state and emotional changes, whether parents are aware of it or not. We, therefore, recommend the use of tools to monitor parents' psychological state, if necessary, to provide professional psychological guidance to those who need it.

Our study demonstrated that the place of residence was an important influencing factor of parental care needs, that was, the score of living in rural areas was lower than that of children living in urban areas (p = 0.003), which is similar to the results of other studies (19). In our study, 46.4% of the respondents lived in rural areas. A previous study has shown that the health literacy level of urban residents was higher than that of rural residents (36). Most of the parents from rural areas lack basic awareness of the disease or had difficulty understanding the outcome of the disease. In other words, rural residents have insufficient knowledge of the disease and lack the initiative to acquire disease-related content.

In addition, quality medical resources are more accessible in cities, but not in rural areas making it impossible to form a reasonable medical orientation, resulting in a lag in the development of medical security and accessibility in rural areas (37). There are still some problems in the equalization of basic medical and health services in urban and rural areas in China, such as insufficient aggregate and unbalanced supply structure. Therefore, the public health resources obtained by rural residents are relatively limited compared to urban residents (38). Accordingly, parents' confidence in local medical care may be affected by those reasons. Simultaneously, rural residents often need to seek medical treatment in different places, so they were less dependent on the medical treatment place, which affects their caregiving needs. Hence, when we carry out nursing health education and nursing intervention, we should take the patient's residence as an important factor to formulate a scientific and standardized individual family nursing model, thereby improving treatment compliance, and improving the clinical symptoms of children.

In addition to the place of residence, children's stool traits were also the factors affecting the parents' nursing needs (p < 0.001), that is, the stool traits were assessed according to the Bristol stool scale, and the harder the stool trait, the higher the parental needs score. This is consistent with the findings of the same type of research (39, 40). A previous study showed that large and hard stool was the most frequent symptom among children with functional constipation, hard stool consistency was found in about 93.7% of cases (41). In the diagnosis of FC and identification of early warning symptoms (42), parental perception of constipation depends primarily on stool traits and frequency of defecation, which is also the most common reason for seeking medical attention. This suggested that parents were more likely to ignore other symptoms, leading to delays in seeking medical treatment. This was also proved by a study in Sri Lanka which showed that only 24% of young children with FC were seen by a medical doctor (43). On the other hand, ignorance of signs and symptoms indicated insufficient awareness of the disease and could affect treatment adherence (33). To achieve consensus on child care, new policies should be mindful of the long period required to guarantee interaction and counseling between parents and healthcare professionals. In addition, parents should be assisted to identify the symptoms and signs associated with the disease and improve their understanding of the disease during consultations and care planning.

In summary, our findings highlighted the caregiving needs of parents caring for a child with FC. The strength of this study lies in the large sample of parents of children with constipation and the large response rate we achieved due to patient pre-survey explanatory instructions and the preparation of small gifts. In addition, our study quantified the different needs of parents in various domains, giving us an intuitive understanding of the needs of parents of FC children. In future clinical practice, clinicians should consider the needs of parents of children, especially the information needs, when communicating with their families about constipation, and conduct personalized communication according to the specific situation of children and parents. According to the information provided by the questionnaire, it is very helpful to organize health education lectures regularly to meet the nursing needs of parents. Create a communication platform to provide opportunities for parents to share information and exchange experiences. The construction of an information-oriented hospital also provides a new communication method for parents who live in rural areas. Medical staff should pay attention to publicizing and using the information facilities of the hospital.

Several limitations of this study should be taken into consideration. Firstly, A cross-sectional design does not explain causality. Secondly, the results are not necessarily representative because of convenience sampling. Thirdly, the study sample was drawn from only one hospital, which may limit the generalization of the findings. A multicenter study with a wider geographic range of selection is recommended. Future studies should employ longitudinal research methods to observe dynamic changes in caregiving needs.