Introduction

Bladder cancer is a common malignant tumor of the urinary system. In 2020, the International Agency for Research on Cancer ranked bladder cancer 10th in terms of number of new tumor cases reported across the world1.There were 573,278 new cases of bladder cancer in the world in 2020 from the global cancer statistics report. According to the prediction of the World Health Organization, the number of cases will double in 2040, and there are 85,694 new cases of bladder cancer in China2,3,4. Radical cystectomy plus urinary diversion is an effective treatment method used currently for bladder cancer, although the treated patients have to wear urostomy bags for the remainder of their lives after the surgery5,6. Therefore, after urostomy, patients experience psychological and physiological problems, along with severe challenges encountered by their home caregivers as well.

Family caregivers, also referred to as informal caregivers, generally include the patient’s partner, children, or relatives who provide continuous home care to the patient and are involved in performing a wide variety of physically, socially, emotionally, and financially demanding tasks related to patient care5,7.According to statistics, over 40 million adults in the United States serve as family caregivers, and cancer is among the top five diseases requiring a caregiver for the affected patient8. In China, when patients return home from the hospital, family caregivers undertake the responsibility of home care5. Studies have demonstrated that the family caregivers of patients with urostomy in China experience difficulty in performing home care and psychological reconstruction5. In addition, some studies show that family caregivers of urostomy patients face many challenges, such as insomnia, fatigue, anxiety, unemployment and economic crisis5.The literature indicates that an unfulfilled need for supportive care places a heavy burden on caregivers, affecting their health and quality of life9,10,11.Family caregivers play an important role in the perioperative period of patients with urostomy5,12. Family caregivers provide medication guidance to the patient, identify complications, and have to replace the ostomy bags, for which they usually receive training5. If the family caregivers have positive emotions overall, the patients are influenced in a positive way to better with the disease12. However, family caregivers are not invincible and, therefore, require assistance from the medical staff to perform their duties of family care better. In addition, family caregivers have to bear expensive treatment costs, which increases their economic pressure, further burdening their lives5.

The literature states that both cancer patients and their family caregivers should be evaluated scientifically and separately to allow for the medical staff to provide accurate nursing support8. However, most of the existing studies on the needs of family caregivers have been conducted in developed nations, with little research reported from developing nations such as China, although the prevalence of patients with bladder cancer is high in these nations as well13. Moreover, no study to date has reported the supportive care needs of the family caregivers of urostomy patients. In this context, the present study aimed to comprehensively explore the supportive care needs of the family caregivers of urostomy patients using qualitative research. The findings would assist the medical staff in providing targeted care and thereby reduce the burden on caregivers.

Methods

Study design

The present study was designed as a qualitative study to comprehensively explore the needs of family caregivers for supportive care. Qualitative research is a research method used in the field of social science, which focuses on the deep reasons and significance underlying human social behavior14. Qualitative research can understand the real experience of caregivers in the care process through in-depth interviews. For example, they may mention the pressure and needs in economic, psychological and physical aspects15,16.This study was completed by eight graduate nursing students and three head nurses.All the researchers in this study have received professional training in qualitative research and mastered the collection and analysis of qualitative data.In order to ensure the rigour of the research, the researchers have done the following work: In this study, peer experts were invited to check and evaluate the research process and results to ensure that the research conforms to academic norms and professional standards.Record the research process in detail, including the time and place of data collection, interview questions and answers, so that other researchers can repeat the research process.

Participants

This study publishes recruitment information through posters and WeChat. A total of 22 family caregivers were invited for detailed interviews between January 2023 and May 2023. All the interviewees are from the First Hospital of Shanxi Medical University.The urostomy nurse and the first author held the responsibility of inviting the interviewees and obtaining signed informed consent. The interview time was decided by the interviewee. The inclusion criteria for participants were age over 18 years, ability to understand Mandarin, and volunteering to participate in the study. The individuals with mental illness were not included in the study. All interviewees were good at expressing their inner feelings and exhibited trust in the researchers.

Data collection and analysis

In order to ensure the rigor and reliability of data, researchers collect data through interviews, observation and text analysis.Twenty-two individual face-to-face semi-structured interviews were conducted by the first author, and each interview lasted one hour. Every interview was audio-recorded and later transcribed verbatim. The recorded interview text was analyzed 24 h after the interview. The interview was conducted at the doctor’s office, and the interviewers were provided an interactive, semi-structured interview guide prior to the interview (Table 1). The interview guide was prepared by condensing and compiling the review of the relevant literature. The interview was considered completed when no new topics were generated. The collected data were analyzed using a thematic approach, following the six-stage thematic analysis process described by Braun and Clarke (2006). The qualitative research software NVivo 12 was employed to facilitate data analysis.

Table 1 Interview guide.
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Ethical considerations

Ethical approval

was obtained from the First Hospital of Shanxi Medical University (reference: K151). The study was conducted in accordance with the Declaration of Helsinki. The researchers introduce the participants to the basic information such as the purpose, content and methods of the study in detail. For example, they explain that they are studying the need of family caregivers, and they will use one-on-one interviews, which will last for about one hour. Then tell the possible risks and benefits, such as interviews may arouse unpleasant memories of caregivers, but the research results may improve their situation. Then provide enough time for participants to ask questions and think, and make sure they understand.All the respondents in this study are adults.All participants signed the informed consent form. All interview materials were saved on a USB flash drive with a password. After the interview, the interviewees were allowed to contact the researcher if they wished to withdraw from the study at any point in time. The information of each interviewee was concealed when the final report was prepared to maintain privacy.

Results

Sample characteristics

Fifty-five family caregivers were approached, and the consent rate was 40%. Finally, 22 family caregivers were included in the study, among which 13 were daughters, 6 were sons, and 3 were wives of the respective patients they were caring for. The age range of these interviewees was 22 to 63 years. In regard to marital status, 15 respondents were married, 4 respondents were divorced, and 3 respondents were unmarried. Among the interviewees, the shortest duration of caregiving was 7 months while the longest duration of caregiving was 4 years. All participants had jobs, except for one unemployed participant. The demographic characteristics of these participants are presented in Table 2. Four themes were identified among the participants: (i) Strong psychological and physical needs; (ii) Eagerness to receive information regarding the patient’s diseases; (iii) Need for social support; (iv) Necessity for spiritual support. Within these four themes, eight sub-themes were constructed using coders (refer to Fig. 1).

Table 2 Demographic characteristics of the participants.
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Theme 1: strong psychological and physical needs

The psychological needs of family caregivers are mainly their spiritual and emotional needs in the process of care. Physical needs refer to the necessary conditions for them to maintain their health in the process of taking care of their families. “Extreme anxiety and panic”and “Feeling out of sorts”are identified as sub-theme.All participants indicated that they were aware of the psychological and physical burden that they would have after the patient underwent urostomy. The participants distinctly stated that they needed psychological and physical support care.

Sub-theme: extreme anxiety and panic

Extreme anxiety is an emotional state. Its main performance is excessive and persistent worry about what may happen in the future, far exceeding normal worry. Panic is a more intense emotional response. It usually happens suddenly, and people will feel extreme fear and fear, as if they are about to face great danger.All participants stated experiencing anxiety and panic, although they also stated that, with time, this negative emotion gradually subsided.

“I feel devastated. I do not know what to do with my father’s future life.” (ID 6).

“I do not know if I can afford the treatment. At the core of my heart, I feel like escaping from this situation. I do not know who I can receive help from.” (ID 22).

“What should I do? I can’t handle urinary ostomy and change urinary catheter. I’m afraid when I see that stoma.”(ID 4).

Sub-theme: feeling out of sorts

This is an unpleasant sensory experience.The respondents distinctly stated that they were unwell because of their bad mood. They felt they were in a sub-health state, although this discomfort, as they felt, had to be hidden from others to prevent causing any worry to the patients.

“I have developed insomnia since I have begun taking care of my husband, and this has been too painful for me.” (ID 19).

“I feel very tired every day and need to take care of several things, such as my father’s diet, etc.” (ID 3).

“Since I took care of my father, I can hardly eat anything. I have no desire to eat, so I have lost a lot of weight, but it is unhealthy.”(ID 18).

Theme 2: eagerness for receiving information regarding the patient’s diseases

Disease information refers to the collection of knowledge about diseases.“Urgent need to master their patient caregiving skills”and“Need for financial assistance for dealing with the disease”are identified as sub-theme.Several interviewees stated that they did not have adequate information regarding the patient’s diseases to make informed decisions.

Sub-theme: urgent need to master their patient caregiving skills

Caregiving skills refer to a series of abilities in taking care of the daily life and physical and mental health of urostomy patients.All participants stated that it is crucial to have adequate information regarding the disease, without which, they feel helpless and on the verge of collapse.

“I just came out of the hospital and I feel I am on the verge of collapsing. I do not understand how to replace the urostomy bag.” (ID 16).

“How would my father bathe? When would he need a reexamination? What should be his diet? I know nothing about these things.” (ID 5).

“My father has been very depressed since he finished the operation. I especially want to give my father some confidence and make him optimistic about life again. But I don’t know how to do it.” (ID 13).

Sub-theme: need for financial assistance for dealing with the disease

In this study, financial assistance refers to providing help to family caregivers of urostomy in the form of money or material.Financial problems are unavoidable for every family. Few families are able to cope with these problems with ease.

“This surgery cost me all my savings. Therefore, I wish a portion of the cost of this surgery would be reimbursed through my father’s medical insurance.” (ID 12).

“I need to pay for my mortgage, car loan, and children’s education every month. My father’s illness increased my already burdensome financial conditions.” (ID 21).

“I have five brothers and sisters, and each of them bears a portion of my father’s treatment expenses.” (ID 10).

Theme 3: need for social support

Social support refers to the spiritual and material support that individuals get from the social relations they have. “Need for social support” and “It is beneficial to establish an exchange group for the family members of patients” are identified as sub-theme. Participants stated that patients who have experienced such great changes in life need assistance from their families and help from society as well.

Sub-theme: it is beneficial to establish an exchange group for the family members of patients

Exchange group is a group composed of patients’ families, in which family members can share their experiences, feelings, difficulties and coping strategies.It is necessary to communicate with the family members of patients as communication might effectively alleviate the anxiety of the family caregivers and improve their home care skills.

“I learned immensely regarding the complications of the disease in the exchange group of patients’ families, and this was quite useful to me.” (ID 1).

“I befriended several people in the patient exchange group, and I did not remain pessimistic and anxious after that.” (ID 11).

“I shared a good way to prevent skin complications with other patients’ families, and I was very happy, so we should hold a group to keep warm.” (ID 21).

Sub-theme: community support is crucial

In this study, community support refers to all kinds of help and resources provided by the community for caregivers.The community could exhibit a more tolerant attitude toward patients and their families, and this would allow patients to return to society and normal socialization with ease.

“Community workers undertook an initiative to assist my father in adapting to his new life by, for example, inviting him to participate in a calligraphy competition.I think from the bottom of my heart that community support is crucial.” (ID 7).

“Doctors and nurses in the community regularly inquired regarding my father’s condition and provided guidance.” (ID 13).

“Community volunteers visit my father at home regularly, and they tell me the main points and precautions of nursing.”(ID 11).

Theme 4: necessity of spiritual support

Spiritual support is an act of giving others psychological encouragement, comfort and affirmation.Spiritual support is necessary for family caregivers as caregiving is a long and arduous process requiring great adjustments in the mentality of these caregivers.

Sub-theme: praise from friends and relatives encourages caregivers

Praise from relatives and friends refers to affirmation and praise from relatives and friends. This kind of praise is usually based on the recognition of a person’s quality and behavior. Relatives and friends could serve as a source of great motivation. The respondents expressed that such praise is important to them for encouragement to continue taking care of their sick family members.

“My father encouraged me to be a filial daughter and appreciated my efforts. I took care of my mother at home, and the laughter and joy at home increased.” (ID 2).

“My neighbors and friends felt moved when they learned that I sacrificed my job to take care of my father. They developed a positive outlook on me, which benefited me immensely. One of my neighbors is a reporter, and she even said that she wanted to report my story.” (ID 12).

“My brother always encourages me. He believes that I can take care of my mother’s diet and daily life. My brother will praise me when I keep my house tidy.”(ID 3).

Sub-theme: realizing self-value is important for caregivers

Realizing self-value refers to the process in which individuals achieve their goals by exerting their own abilities and potentials and have a positive impact on themselves and the world around them. It is an obligation to take care of sick parents, similar to the responsibility of taking care of one’s children. Parents raise their children, and when parents need their children to take care of them, children should not refuse.

“It is my duty to take care of my father. I cook and wash clothes for my father every day. I also remind him to take his medicines. His condition is improving with time, and that makes me feel satisfied.” (ID 5).

“My daughter considers me her role model and almost worships me. She says she would be filial to her mother like me in the future.” (ID 13).

“There’s a saying in China that raising children for old age.Father said I was a filial son.”(ID 4).

Fig. 1
figure 1

Affinity diagram showing four themes and subthemes concerning supportive care needs of family caregivers with urostomy patients.

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Discussion

The present study was conducted with 22 subjects, among which 72% were female respondents. According to previous studies, women have gender advantages during home care. Females appear to be more careful about the condition of the patient, which is beneficial to family care. In China, due to the deep influence of traditional Confucianism, it is believed that females should take care of the elderly and children, while males should be more inclined to earn money to support their families17,which is consistent with the research results of family caregivers in other Asian countries18.For example, in traditional Japanese families, men are usually the main breadwinners, and they will spend most of their time and energy on their work. Women are mainly responsible for housework and take care of children and the elderly19.

This study draws lessons from the conceptual framework of supportive care, which was put forward by Fitch in 1994.The definition of supportive care framework is to provide necessary support and help for cancer patients and their caregivers to meet their physical, emotional, social, psychological, information, spiritual and practical needs in the stages of diagnosis, treatment and follow-up20.Under the guidance of this theoretical framework, four themes and eight sub-themes were identified, covering the physiological needs, psychological needs, information needs and spiritual needs of family caregivers.

A caregiver is at a higher risk of mental illness and physical health burden. Several studies have reported that the probability of family caregivers suffering from anxiety and depression is much higher than that of ordinary people5,21. In addition, family caregivers develop health problems, such as sleep disorders, weight loss, and fatigue22,23,24. The respondents in the present study also reported problems of depression and physical discomfort. Therefore, it is imperative to provide these caregivers with professional supportive care.

The physical and mental health of family caregivers directly determines the quality of home care. In 2018, Dr. Lyons and Dr. Lee proposed the dual disease management theory, the core elements of which included dual evaluation, dual management behavior, and dual health25. The theory emphasizes that disease management is a binary phenomenon, and comprises the shared response of patients and caregivers25. The disease evaluation status of both parties affects their behavior in disease management, and the goal is to optimize the physical and mental health of the members of this binary group. Accordingly, paying attention to the physical and mental health of family caregivers would imply providing patients with higher-quality home care services.

It is vital for family caregivers to urgently receive adequate information regarding the diseases of the patients they are caring for. For example, Azim Azizi reported that information support effectively reduced the state and trait anxiety of the family caregivers of stroke patients26. In the present study, family caregivers perform the task of family care better only when they have sufficient information regarding the disease. Economic problems are inevitable for every family. A few patients stated that they did not have medical insurance, which greatly increased the economic burden on their family caregivers. Expenses related to the treatment, medicines, and equipment are increasing as time progresses, while the family income of the patients and their family caregivers does not increase in the same proportion, resulting in an economic burden5. The caregivers might need to reduce their working hours or give up their jobs to take care of their families better. Consequently, the quality of life and economic situation of these caregivers is affected greatly.

Previous studies have demonstrated that social support could assist in relieving the pressure felt by family caregivers. A study in Tunisia revealed that the burden of caregivers is highly correlated to social support (p < 0.001, r= − 0.41), and low levels of social support are related to a high burden on the caregivers27. According to a study, the quality of life of the family caregivers of schizophrenics in Spain was closely related to social support28. Stronger social support implies reducing the burden of care by alleviating psychological problems. In regard to active care, by increasing the support received from society, the burden of care on caregivers is expected to be reduced29. The results of the present study are consistent with those of previous studies. In the present study, several family caregivers mentioned the importance of social support in their lives and believe that social support could alleviate the anxiety of caregivers and facilitate faster reintegration of patients and their families into society.

The present study also revealed that spiritual support is necessary for family caregivers. This could be related to China’s traditional Confucianism. Confucian filial piety is a traditional virtue that the Chinese nation has followed for a long time30.Filial piety refers to children’s respect and care for their parents31. The Confucian concept of filial piety emphasizes that children should do their best to honor their parents. A person taking care of sick family members is praised by other relatives and friends12. In the present study, several family caregivers were praised by others, which they considered as great spiritual support. These caregivers firmly believed that they were righteous and, therefore, felt motivated to take care of the patients.

In the future, the evaluation of family caregivers’ care needs can be tracked vertically, and the changing track of family caregivers’ needs can be clarified; Extend the follow-up time, increase the physiological measurement index, and provide the basis for further accurate intervention.

Strengths and limitations of the study

The needs of family caregivers are often ignored and remain unfulfilled. However, as the ones providing home care, family caregivers should receive greater attention from researchers. The present study revealed that family caregivers need supportive care in various forms, and this finding would be helpful for the medical staff to implement targeted supportive care.

However, as with all research, the present study also had certain limitations. First, the proportion of female caregivers was higher in the present study, and, therefore, the needs of male caregivers might not have been revealed adequately. Second, due to the requirement of selecting samples for qualitative research, all subjects selected in the present study were good at expressing their feelings and needs, and the needs of family caregivers who are not good at expressing themselves could have been neglected. Third, all interviewees in the present study were from cities, and the needs of family caregivers living in rural regions might be different.

Conclusion

The need for supportive care among family caregivers is universal and strong. Unfortunately, several of these needs remain unfulfilled. Therefore, it is necessary to assess the needs of caregivers to better provide targeted care. This would improve the care quality of family caregivers and also the quality of life of caregivers.

Implications for nursing practice

At present, clinical nurses are not aware of the supportive care of the family caregivers of patients with urostomy. These nurses are usually not sure about the key needs, which renders it difficult to improve the satisfaction rate of patients’ needs. Therefore, it is necessary to conduct a survey of supportive care needs and analyze, scientifically and systematically, the demand categories and needs of family caregivers during the perioperative period of the patient.

Our research reveals the supportive needs of family caregivers in the process of caring for patients. It is necessary and meaningful to meet these needs. When the needs of family caregivers are fully met, the quality of patients’ home care can be improved. Therefore, medical staff should not ignore the needs of family caregivers.