Study design
We conducted an exploratory qualitative study using a semi-structured interview guide (Table 1) in order to examine parents' experience of seeking healthcare for their children and the needs they have regarding health care. The use of qualitative research may provide an opportunity for an in-depth understanding of perspectives about the research question and using them to directly guide the development of guideline recommendations. The ethics committee of Beijing Tiantan Hospital, CapitalMedical University, approved this study. All participants or their parents or legal guardians provided informed consent.
Table 1
Semi-structured interview guide.
Health seeking experience · Please talk about your feelings during the process of taking your child to see a doctor༟ · What is the biggest difficulty in taking your child to see a doctor? · How would you describe your experience? |
Health services needs · What health services did you need? · What services and/or professionals helped you most or least? · Were there serivce you felt you needed but could not get? · What measures would you like medical staff and medical administration to take to improve the status of medulloblastoma diagnosis and treatment? · What other help and support would you like to receive? |
Study Participants
A total of 15 parents of children aged 3 to 14 who were hospitalized at the Beijing Tiantan hospital with medulloblastoma participated in the study. To ensure a wide variety of families were represented in the sample, we attempted to select families based on a variety of demographic characteristics (including education, occupation, income level and source, and geographical location). We conducted semi-structured interviews with patients undergoing treatment or who have completed the course of treatment.
Data collection
This study was communicated to the parents via our pediatric neurosurgery chat group that set up post-operative follow-ups. Research team members contacted interested parents and screened them to ensure that they met the inclusion criteria (e.g., they had suitable psychological conditions to participate in the study and the child had undergone surgery). After obtaining consent, eligible participants were interviewed using a semi-structured interview guide (Table 1), which lasted approximately 30 ~ 40 min.
Data analysis
A data analysis was conducted following several interviews, and interviews continued until no new themes or insights were apparent from the subsequent transcripts. The first two authors extracted data from the individual studies and discussed them with the other members of the research team. The qualitative findings were analyzed using a thematic approach. Three main steps were followed in order to generate a comprehensive set of synthesized findings: coding text line-by-line, developing descriptive themes, and generating analytical themes.
Findings
Table 2 shows the demographic characteristics of the participants. This study involved either the patient's mother or father. In terms of education level, eleven of the participants were high school graduates or higher. The median age of the participants was 36.27 ± 4.74 years with a range of 29 to 45 years. Twelve of the individuals were employed, including office workers, self-employed individuals, and laborers. Among them, eight reside in the city and seven reside in the countryside.
Table 2
ID | Parent interviewed | Parental age | Education | Occupation | Native place | Child’s gender | Child’s age |
1 | Father | 34 | Primary school | Office worker | city | Female | 8 |
2 | Mother | 37 | High school | Self-employed | city | Female | 7 |
3 | Father | 29 | Primary school | Laborer | country | Male | 4 |
4 | Father | 39 | University | Self-employed | country | Male | 10 |
5 | Mother | 30 | University | Office worker | city | Male | 5 |
6 | Mother | 32 | High school | Laborer | country | Male | 7 |
7 | Father | 40 | High school | Office worker | city | Female | 9 |
8 | Mother | 32 | Primary school | Office worker | country | Female | 7 |
9 | Father | 43 | High school | Laborer | country | Male | 8 |
10 | Mother | 35 | Primary school | Laborer | city | Female | 6 |
11 | Father | 39 | High school | Homemaker | country | Male | 10 |
12 | Mother | 32 | University | Homemaker | country | Female | 6 |
13 | Mother | 39 | University | Homemaker | city | Male | 9 |
14 | Mother | 38 | High school | Self-employed | city | Male | 8 |
15 | Mother | 45 | High school | Self-employed | city | Female | 14 |
There were two main themes and seven subthemes identified from the parent interviews: 1) parents facing a variety of difficulties during the treatment program; 2) parents' expectations regarding the future. These themes will be discussed in detail below. Table 3 provides a summary of quotes from parent experiences, organized by theme and subtheme.
Table 3
Additional quotes of parent experiences, organized by theme and subtheme
Theme 1. Parents facing various difficulties during treatment course |
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Subtheme 1. Delay in diagnosis · “The pediatric departments of the local tertiary hospitals often treated the patients according to digestive disorders, which may lead to delay of the treatment for more than 3 months.” · “The municipal hospital has lack of experienced, and most were general pediatrician with lack of experience regarding the pediatric brain tumors.Brain tumor related examinations were not performed during the initial visit. ” · “The brain tumor related examination was not performed until the patient was in critical condition. ” · “Seeking a proper health service is difficult, and it is even more difficult for non-local patients to seek a proper health service in first-tier cities such as Beijing.” Subtheme 2. Lack of communication with the healthcare providers during the treatment process · “We don't know how to treat it, there is no consistency of the treatment modalities in each hospital. ” · “ Parents need to explore by themselves. We changed three hospitals for surgery, radiotherapy, and chemotherapy. We also went from Shanghai to Beijing and experienced all kinds of hardships.” Subtheme 3. Unexpected postoperative outcomes and complications made parents feel unprepared · “Local hospitals do not have treatment experience and places for children's tumors, and there is no follow-up help from medical staff for children's later rehabilitation. It is even more difficult for children with brain tumors to find professional guidance for later psychological problems.” Subtheme 4. Economic burden throughout the treatment course · “The cost is too high, and the national medical insurance coverage for the treatment of children with serious diseases is insufficient. During the treatment process, we often encounter children who give up treatment because of their financial burden. ” · “Some of the therapeutic drugs are not covered by medical insurance, the proportion of medical insurance in other region is low, and the economic burden is relatively high for ordinary families.” · “The reimbursement procedure is cumbersome and the reimbursement amount is low. I hope to simplify the reimbursement procedure and increase the reimbursement ratio.” · “Hospital beds in the first-tier cities tertiary hospital often full, and the waiting period for admission is often too long, resulting in additional expenses.” |
Theme 2: Parents' expectations regarding the future Subtheme1. Expectation for more generalization and promotion of brain tumor knowledge · “Hospitals should generalized early detection, early diagnosis, and early treatment of pediatric brain tumors.” · “We hope that during the course of treatment, the child's disease progression can be understood, and the medical staff can give the parents some knowledge of pediatric brain tumors and their suitable treatment modalities.” · “ I hope that the doctor can weigh the pros and cons to analyze the condition and give the family a pertinent suggestion, instead of listing a few options for our parents to choose,we really don’t understand. I don’t know the procedures for seeking the medical services.” · “I don’t know what to do when I realized that my child is sick, and it’s hard to queue up for a hospital check. After the end of the treatment, I don't know how to make the child recover for the best.” Subtheme 2. Expectation for multidisciplinary diagnosis and treatment · “Each hospital has its own specialties. If a child wants to get the best treatment, he needs to travel to several hospital.We hope that the treatment staged could be well coordinated. For example, if radiotherapy and chemotherapy are required after surgery, the patients can be directly transferred to the chemotherapy and radiology department, so that the post-surgery treatment could be facilitated, instead of instructing the patient's family members to register and queue up to find another related department, because the family members are blind to the treatment in addition to being distressed and anxious to take care of the child.” Subtheme 3. Expectation for more social and economic support · “We hoped that the reimbursement ratio of medical insurance in different region could be increased, the subsidy for children's serious illness could have more concerned, particularly children's brain tumors. ” · “We hoped that the relevant government departments could increase the research and development of medulloblastoma drugs and develop targeted drugs as soon as possible. ” · “Our child has been sick for more than four years, and has been receiving lots of treatment. I hope that scientists can break through the problem as soon as possible.” |
Parents facing various difficulties during treatment course
Delay in diagnosis
Medulloblastoma is often misdiagnosed and mistreated in children during the course of treatment: “The pediatric departments of the local tertiary hospitals often treated the patients according to digestive disorders, which may lead to delay of the treatment for more than 3 months.” (ID1) There are some parents who complain that the distribution of medical resources across the country is unequal, resulting in various difficulties for patients seeking treatment in higher-level hospitals. A lack of expert physicians in the local hospitals caused a lack of standardization in the treatment of brain tumors. A brain tumor-related examination is often conducted when a patient's condition has deteriorated: “The municipal hospital has lack of experienced, and most were general pediatrician with lack of experience regarding the pediatric brain tumors. Brain tumor related examinations were not performed during the initial visit”. (ID2) “The brain tumor related examination was not performed until the patient was in critical condition”. (ID5) “Seeking a proper health service is difficult, and it is even more difficult for non-local patients to seek a proper health service in first-tier cities such as Beijing.” (ID6)
Lack of communication with the healthcare providers during the treatment process
Throughout the treatment course, most parents reported experiencing several difficulties, including a lack of cooperation among various disciplines and a lack of professional guidance from medical staff, resulting in a discontinuation of the standard treatment:“We don't know how to treat it, there is no consistency of the treatment modalities in each hospital. Parents need to explore by themselves. We changed three hospitals for surgery, radiotherapy, and chemotherapy. We also went from Shanghai to Beijing and experienced all kinds of hardships.” (ID 9)
Unexpected postoperative outcomes and complications made parents feel unprepared
Some parents felt prepared, while others felt unprepared to handle their children's postoperative complications. There is a lack of professional guidance for postoperative management of the patient. Radiotherapy and chemotherapy are often associated with long-term side effects, such as cognitive impairment, mental decline, growth retardation, endocrine dysfunction, infertility, and secondary tumors, etc[7, 11, 15]. In many cases, parents are unaware and unprepared to deal with the sequela of radiotherapy and chemotherapy. The occurrence of long-term complications has prompted parents to seek guidance regarding long-term rehabilitation. However, there is still a lack of professional guidance regarding this issue. Many parents felt unprepared to deal with the issues that arose for their children because they were unprepared for the situation: “Local hospitals do not have treatment experience and places for children's tumors, and there is no follow-up help from medical staff for children's later rehabilitation. It is even more difficult for children with brain tumors to find professional guidance for later psychological problems.” (ID 10, ID12)
Economic burden throughout the treatment course
Treatment costs for children with medulloblastoma are relatively high, and most families are unable to afford them:“The cost is too high, and the national medical insurance coverage for the treatment of children with serious diseases is insufficient.” (ID 8) “During the treatment process, we often encounter children who give up treatment because of their financial burden.” (ID3) “Some of the therapeutic drugs are not covered by medical insurance, the proportion of medical insurance in other region is low, and the economic burden is relatively high for ordinary families.” (ID4) “The reimbursement procedure is cumbersome and the reimbursement amount is low. I hope to simplify the reimbursement procedure and increase the reimbursement ratio.” (ID 13) Patients who travel from other regions to first-tier cities for medical treatment incur direct medical expenses, as well as indirect expenses such as transportation, accommodation, and lost income for a temporary period: “Hospital beds in the first-tier cities tertiary hospital often full, and the waiting period for admission is often too long, resulting in additional expenses.”(ID 15)
Parents future expectations regarding the future
Expectation for more generalization and promotion of brain tumor knowledge
The parents expect that medical staff should be more aware and attentive to pediatric brain tumors in order to prevent delays in diagnosis caused by a lack of knowledge:“Hospitals should generalized early detection, early diagnosis, and early treatment of pediatric brain tumors.” (ID 14)There is a lack of relevant professional knowledge among the parents, and they expect to gain additional knowledge from physicians so that they will be able to participate in the treatment process more effectively:“We hope that during the course of treatment, the child's disease progression can be understood, and the medical staff can give the parents some knowledge of pediatric brain tumors and their suitable treatment modalities.”(ID8)“ I hope that the doctor can weigh the pros and cons to analyze the condition and give the family a pertinent suggestion, instead of listing a few options for our parents to choose,we really don’t understand. ”(ID2) “I don’t know the procedures for seeking the medical services, I don’t know what to do when I realized that my child is sick, and it’s hard to queue up for a hospital check. After the end of the treatment, I don't know how to make the child recover for the best.”(ID 7)
Expectation for multidisciplinary diagnosis and treatment
The treatment of medulloblastoma in children includes a comprehensive approach, so most parents expect that their children's treatment will involve the cooperation of a variety of disciplines:“Each hospital has its own specialties. If a child wants to get the best treatment, he needs to travel to several hospital.We hope that the treatment staged could be well coordinated. For example, if radiotherapy and chemotherapy are required after surgery, the patients can be directly transferred to the chemotherapy and radiology department, so that the post-surgery treatment could be facilitated, instead of instructing the patient's family members to register and queue up to find another related department, because the family members are blind to the treatment in addition to being distressed and anxious to take care of the child.”(ID12)
Expectation for more social and economic support
There is a great deal of economic pressure on most patients. The parents of children with brain tumors hope that the government can provide a better health policy, as well as hope that society will give more attention and support to the disease: “We hoped that the reimbursement ratio of medical insurance in different region could be increased, the subsidy for children's serious illness could have more concerned, particularly children's brain tumors. ” (ID4)“We hoped that the relevant government departments could increase the research and development of medulloblastoma drugs and develop targeted drugs as soon as possible. ” (ID11)“Our child has been sick for more than four years, and has been receiving lots of treatment. I hope that scientists can break through the problem as soon as possible.” (ID13)