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Original Article Process of empowerment in mothers of children with very-early-onset inflammatory bowel disease: a qualitative study
Mikako Yokoo1orcid, Satomi Nomura1,2orcid, Satoe Fukui3orcid, Ichiro Takeuchi1orcid, Hirotaka Shimizu1orcid, Katsuhiro Arai1,orcid

DOI: https://doi.org/10.5217/ir.2024.00048
Published online: February 24, 2025

1Center for Pediatric Inflammatory Bowel Disease, Division of Gastroenterology, National Center for Child Health and Development, Tokyo, Japan

2Department of Child Nursing, National College of Nursing, Tokyo, Japan

3Department of Educational Psychology, Tokyo Gakugei University, Tokyo, Japan

Correspondence to Katsuhiro Arai, Center for Pediatric Inflammatory Bowel Disease, Division of Gastroenterology, National Center for Child Health and Development, 2-10-1 Okura, Setagaya, Tokyo 157-8535, Japan. E-mail: arai-k@ncchd.go.jp
• Received: April 3, 2024   • Revised: November 28, 2024   • Accepted: December 2, 2024

© 2025 Korean Association for the Study of Intestinal Diseases.

This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/4.0/) which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited.

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  • Background/Aims
    Mothers of children with very-early-onset inflammatory bowel disease (VEO-IBD) face unique challenges; however, these challenges and their consequences have not been well described. This study clarified the experiences and processes of empowerment of mothers of children with VEO-IBD.
  • Methods
    This study performed a qualitative inductive analysis using semi-structured interviews. The interview content was transcribed, generating core categories, categories, and subcategories with a focus on mothers raising children with VEO-IBD. A modified grounded theory approach was employed to inductively construct a theory from the qualitative data.
  • Results
    Fifteen mothers of children with VEO-IBD were interviewed (mean age, 43.9 ± 6.2 years). The modified grounded theory approach revealed the processes experienced by the mothers. The mothers faced various difficulties when their children developed VEO-IBD; however, their efforts to cope with these difficulties changed their situation. Furthermore, they were supported by various individuals, including family members, medical personnel, and, occasionally, families of other children with VEO-IBD. These processes strengthened and empowered the mothers.
  • Conclusions
    Mothers of children with VEO-IBD who faced various difficulties were empowered through their efforts and support from family and others who understood their challenges. This process of empowerment continues throughout the development of children with VEO-IBD.
  • Keywords: Empowerment; Grounded theory; Interview; Mother; Very-early-onset inflammatory bowel disease
Inflammatory bowel disease (IBD) is a chronic gastrointestinal disorder characterized by symptoms such as abdominal pain, bloody diarrhea, and poor weight gain [1]. Very-early-onset IBD (VEO-IBD), defined as IBD with onset and diagnosis before 6 years of age, remains challenging for pediatric gastroenterologists [2,3]. Diagnosis at such a young age may be delayed because of its atypical clinical phenotypes and the limited experience among pediatricians [4,5]. Additionally, some patients with VEO-IBD experience severe disease activity that is refractory to conventional IBD treatment [6,7].
Raising a child with a chronic illness at a young age can constitute a crisis for the family and challenge the parent-child relationship. Previous studies on parents of children with chronic diseases that developed in infancy or childhood have shown that these parents face difficulty in continuing to care for their children, become powerless, and experience various psychosocial problems [8,9].
Considering that these difficulties differ according to the disease or condition of their children, proper care and support for parents should be considered based on disease characteristics. However, to the best of our knowledge, no psychosocial studies on parents of children with VEO-IBD have been reported to date, and there is limited knowledge of the difficulties they face and the expected support. Thus, it is essential to understand the experience of parents raising children with VEO-IBD, including their situation and feelings, and determine their needs. When considering the support needs of parents of children with chronic illnesses and disabilities, “empowerment” is essential. Gibson conceptualized empowerment as a personal process in which individuals develop and employ the necessary knowledge, competence, and confidence to ensure that their voices are heard [10]. Thus, the support and interventions required to empower mothers of children with diseases should be discussed based on empowerment [11].
The process of empowerment in parents of children with VEO-IBD is generally evaluated in qualitative studies as narrative data related to the daily lives and experiences of parents [12]. A qualitative study of the daily experiences and feelings of mothers of adolescents with IBD revealed the important need for mothers to be respected and allowed to express their feelings [13]. IBD is a chronic illness that affects the lives of individuals, including dietary habits and bowel movements; it requires long-term treatment. These factors impose a significant burden on parents of children with IBD, particularly VEO-IBD. Thus, to better support parents, their overall experiences must be understood. This study aimed to clarify the experiences of parents of children with VEO-IBD and their empowerment processes via qualitative research methods.
1. Study Design and Participants
A qualitative inductive analysis was conducted through semi-structured interviews. Participants included mothers of children with VEO-IBD being cared for at a pediatric IBD center in metropolitan Tokyo, Japan. The inclusion criteria were a diagnosis of VEO-IBD made at least a year ago, the child being under outpatient care, and the mothers being emotionally stable and able to recall and discuss their experiences. Mothers of children with monogenic IBD were excluded due to the distinct concerns related to genetic disorders and the more complex clinical courses of most monogenic IBD cases, which often involve poor responses to conventional management compared to non-monogenic IBD.
2. Data Collection
After obtaining written informed consent, participants were requested to complete a 10-minute pre-survey to provide basic information. The questionnaire included the age of the child (current and at onset), disease diagnosis, age of the mother (current and at onset), work status, presence of supporters, and family structure. The parents were informed that the semi-structured interviews could be conducted face-to-face in a private room in the hospital or online using Zoom (Zoom Video Communications, San Jose, CA, USA). The online interview was similarly conducted in a private room. All interviews were carried out by a certified clinical psychologist (M.Y.) who was involved in the care of mothers of children with VEO-IBD. During the interviews, questions were asked following an interview guide (Table 1), and participants were asked to speak freely regarding their experiences and thoughts. To minimize the burden on participants, the interviews lasted 60–90 minutes per person.
3. Data Analysis
Data analysis was performed through a modified grounded theory approach (M-GTA), characterized by inductively constructing a theory from qualitative data. The original GTA generated concepts by fragmenting data into single words, phrases, or lines and examining their meaning [14,15]. M-GTA uses a unique analytical worksheet to conceptualize the smallest units of meaning from the analytically focused perspective, enabling deeper interpretations that are rooted in the meaning of the data. The M-GTA is suitable for investigating processual phenomena. The M-GTA can be used to derive an explanatory theory based on data in the limited scope of a research topic, thereby promoting its application in human services [16,17]. Fig. 1 shows thematic analysis. This study examined how parents in a powerless state increased their ability to support their children with VEO-IBD while interacting with their surroundings. The interviews were recorded using an integrated circuit recorder and transcribed verbatim. The data of the mother with the most variations were initially read through, and concepts were generated considering the analysis theme of “a mother raising a child with VEO-IBD.” To generate the concepts, an analysis worksheet comprising 4 columns (concept names, specific examples [variations], definitions, and theoretical notes) was created. A worksheet was used for each concept. The ideas and questions that arose during the analysis were written under “theoretical notes.” For data from the cases with the second most variations and others, new concepts were generated by examining specific examples, similar examples, and counterexamples of previously generated concepts. The generated concepts were examined against participants’ data to determine if any new data were available to be added to the concrete examples of the concepts, thereby eliminating arbitrary interpretations. Concurrently, the relationships with other concepts were examined, and core categories, categories, and subcategories were generated from multiple related concepts. Concepts with only a few concrete examples were still conceptualized if deemed important for the analysis of the focal person and theme.
The analysis results are graphically represented as a diagram of the mutual relationship and process of change among the concepts, categories, and core categories based on the psychological time flow, and a summary is provided. After interviews and verbatim transcription by a certified clinical psychologist (M.Y.), analysis and schematization of the extracted data using M-GTA were conducted by M.Y. and another professor level certified clinical psychologist who was not involved in patient care. The results and schema were reviewed by other co-authors before finalization.
4. Ethical Considerations
The study was approved by the Ethics Committee of the National Center for Child Health and Development, Japan (approval number: 2020-340) Written informed consent was obtained from all participants after detailed explanation of the purpose and method of this study. This study was conducted in compliance with the principles of the Declaration of Helsinki.
Table 2 presents the demographic data of 15 participants. The age of the children at disease onset ranged from 2 months to 5 years, and the current age range of the children was 8–15 years at the time of the interview. Only 1 online interview was conducted, whereas the others were face-to-face.
1. Experiences of Raising Children with VEO-IBD and the Process of Empowerment
Five core categories, 30 categories, and 119 subcategories were extracted from the interviews and formulated as mothers becoming empowered through their difficult experiences. Fig. 2 shows the results of the process that yielded the core categories and categories. Tables 3-6 describe the subcategories.
2. Storyline of Experiences in Raising Children with VEO-IBD and the Empowerment Process
The mothers experienced difficulties when their children developed VEO-IBD. With support from their families, the mothers devoted repeated efforts to coping with each difficulty. These efforts were supported by family members, medical personnel, and others. With time, improvement was observed in the circumstances and the mothers themselves. Consequently, they discovered and strengthened their true abilities and were empowered. However, even after the initial empowerment process, difficulties still occasionally arose depending on the medical condition, growth, and developmental stage of the child. The mothers with improved coping abilities continued their empowerment process.
3. Description of Core Categories

1) Difficulties

This core category described experiences in which mothers became powerless because of the problems arising after the onset of their children’s illness. Most of the children with VEO-IBD in this study were referred from other secondary or tertiary hospitals for undiagnosed or uncontrolled conditions. Thus, the mothers struggled with the feeling of their children not receiving satisfactory medical care, although they sought help at hospitals when they noticed their children’s unusual conditions. Subsequently, the children were admitted to a specialized hospital for VEO-IBD and diagnosed with IBD. However, the mothers appeared to feel pain and had difficulty accepting the diagnosis. Certain mothers felt that they could do nothing but watch their children in pain (Table 3). Mother I explained, “He cried only when the doctor came. It was like he was afraid of what the doctor might do. I felt like I had to hold him down for the doctor to complete his examination. That was hard” (Mental pain in caring for a child patient). In addition, she experienced difficulty in continuing to accompany and care for a young child who was not accustomed to being away from home or family (Difficulty and distress of accompanying child during hospitalization). Although many mothers wanted to actively participate in the treatment, they were passive toward specialized care for VEO-IBD. They tended to be anxious and distrustful of the treatment and care process. Mother A said, “I have no choice but to swallow it” (No choice but to follow the decisions of medical personnel). After the discharge of the children from the hospital, the mothers were typically responsible for the treatment and care at home, which distressed them. Certain mothers were heavily burdened because they could not rely on their husbands or parents, who were supposed to provide support, and these mothers also had to care for the siblings of the child with VEO-IBD. Mother E stated, “My husband said he works outside, and he should be free to do what he wants. I think it would be different if he tried to help me” (Family members who cannot understand or rely on each other). Apart from worrying about the potential troubles that may arise when their children begin school or social activities, many mothers were conflicted by not fully understanding the painful experiences and feelings their children may face in those settings. Their anxiety regarding the future of their children increased. Mother D said, “I am so scared; I cannot even imagine how difficult it will be to support my child mentally. I always wonder how he will handle this disease when he gets older” (Anxiety regarding the future). One of the mothers was unable to talk about the negative feelings arising from her difficult experiences. She attempted to focus on her daily life and work, but she was mentally and physically ill. She said, “I feel I am weak. Why am I like this when my child is fighting so hard against the disease?” (Difficulty in being strong) (Feeling guilty).

2) Effort

This core category included experiences in which they repeatedly took initiative despite the difficulties and made several efforts to improve the situation for their children (Table 4). First, many mothers searched for specialized hospitals to accurately diagnose their children and administer better treatment. They visited various clinics or hospitals, gathered information on the disease to help their children receive proper treatment, and actively consulted medical personnel during treatment. Mother I said, “I thought something was wrong because it kept happening; therefore, I went to several local clinics and hospitals in the city. I did not know what was going on” (Search for and visit a specialist hospital). To continue in-hospital treatment, many mothers struggled to balance caring for the hospitalized and their siblings. Mother K said, “I came to visit him in the morning and stayed with him until he slept. Thereafter, I went to my parents’ house to pick up my other kids and returned home” (Continued visitation during hospitalization) (Balancing caring for patients and siblings). After the discharge of the children from the hospital, the families continued the care that was provided at the hospital, and, with trial and error, they discovered various ways to continue providing suitable care for the children and each other. In addition, to support the return of the children to school, the mothers explained the disease to the school staff and lobbied for their understanding and improvement of the school environment. Mother G said, “Every time the caregiver or teacher is changed, I have to explain my daughter’s condition again and what they need to do to properly care for her. In addition, I tell them that she will require some school days off to visit a hospital and may require hospitalization again” (Approach to school personnel). Interestingly, many mothers took the initiative to support their children’s wellness by having the children confront their illnesses while not forcing them to do too much and supporting their challenges as much as possible. Mother D said, “I do not want her to feel ashamed about her disease. I do not want her to think that she has to be helpless because of her illness. I tell her that although she has a disease, she is fine and can exercise, talk, and move around just like any other child” (Helping child to cope with disease). Certain mothers attempted to be positive and commenced various efforts such as approaching others who had experienced the disease and changing their work style. Mother J said, “When I come to the hospital monthly, I see many children with various diseases. It made me realize that I am not alone, and many people are having an even harder time. I should be grateful because my child is doing OK” (Thinking and acting positively).

3) Support

This core category concerns the individuals and conditions that support and empower mothers who make efforts. Family members, medical personnel, and interactions with fellow mothers who have children with diseases were major sources of support. Mother K said, “The connection with a fellow mother whose child had the same illness really impacted me. Sharing our understanding about our similar struggles and feelings was so reassuring” (Mother raising a child with IBD) (Table 5). Specialized medical care with sufficient explanation, as well as care for the conditions of patients and their families, also led to a great sense of security. Mother I said, “I was given a full explanation of the expectations and limitations of each treatment. They were clear to me” (Support from doctors) (Shared decision-making). Support from school personnel, friends, and colleagues was a major source of strength. Mothers were encouraged by the positive growth and development of their children, despite their illness. Mother D said, “If my child is not trying to get better, I would not have done this much. However, as a mother, I have to do my best while he is making an effort to get better” (Strength of child).

4) Empowerment

This core category included changes that occurred as they proactively devoted efforts toward childcare and were empowered by support (Table 6). Many physically, mentally, and socially positive changes were observed in the children and their families. Mother I said, “Endoscopy and other tests are hard to undergo; however, it is still wonderful to be able to live a normal life” (Daily life not disturbed by disease). In addition, as the mothers continued to provide care, their coping skills improved, and their burdens gradually lessened. In certain cases, they developed a sense of security and fulfillment by deepening their bonds with family members or other families who helped to provide care. Their work environments even became relaxing. Mother L said, “I feel like I can go home with peace of mind after seeing the doctor” (Trust in hospital). Owing to these changes, certain mothers affirmed that they could view their difficult experiences in a more positive light, and they realized their strengths and the support of those around them. Mother E said, “I feel like I can handle a big challenge” (Gaining mental strength).
This study illustrated the process of empowering mothers of children with VEO-IBD. These mothers faced various difficulties beyond disease activity and medical treatment. Their subjective efforts to improve their child’s condition and environment and the support they received potentially improved the disease condition of the child, the caring environment, and their coping skills, thereby empowering them. Even after being empowered, children with VEO-IBD and their mothers continue to face difficulties in different phases of their development and the course of the disease. However, they could repeatedly undergo a similar process, which strengthened and empowered the children and their mothers.
The present data were compared to those of previous studies. Qualitative studies on the parents of adolescents with IBD revealed the challenges and considerations of supporting their children while facing anxiety regarding the relapse of IBD and the concerns for their future, as observed here [12,18]. The major difficulty for adolescents with IBD is in promoting self-care while accepting the incurable disease at a time when they are trying to establish their identity. However, at the onset of VEO-IBD, the major hurdle is receiving a proper diagnosis and the appropriate treatment. The atypical clinical features of VEO-IBD, the unfamiliarity of general pediatricians with IBD, and limited access to facilities for pediatric endoscopy delay accurate diagnoses and treatment. These delays increase anxiety and the burden on both children and parents, promoting parental distrust toward medical personnel. Furthermore, the inability of children with VEO-IBD to fully express themselves places an extra burden on mothers to decipher their children’s emotions. Young children with VEO-IBD may not experience school or social participation; thus, they may be anxious regarding such programs. The experiences and difficulties faced by mothers of children with IBD may differ according to the age and condition of the children.
Another comparison was made with mothers raising children with childhood-onset illnesses other than IBD. In a study on the experiences and process of empowerment of parents of children with childhood cancer, the fear that children may die of cancer was prominent, and the main theme was supporting treatment while holding on to this fear [19]. In addition, anxiety regarding rapidly changing symptoms was the main theme in a study on the experiences of parents of children with asthma [20]. The parents in both aforementioned studies were oriented toward a radical cure and continued to support the treatment by maintaining a positive attitude [19,20]. However, among the parents of children with VEO-IBD, the most important theme was that they had to learn to live with an incurable disease. Furthermore, the parents had to accept that the symptoms of the children may relapse repeatedly throughout their lives and that they would have to continue treatment such as diet restrictions and medication. In addition, because they aimed for remission rather than a complete cure, it was difficult for them to adopt a mindset of facing the disease. To promote the empowerment of mothers, their individual situations must be examined.
The study findings reveal 3 important points to note to provide useful support for mothers of children with VEO-IBD. The first is support for the establishment of an appropriate medical care system for children with VEO-IBD. A previous study indicated that mothers of children with undiagnosed chronic disease had heavy emotional burdens while they are involved in the children’s medical care actively, and this study found that mothers of children with VEO-IBD had similar experiences [21]. However, by connecting with our hospital, a specialized facility that treats many VEO-IBD cases, they could improve the understanding of their child’s condition and treatment, which promoted their empowerment. From this, we learned that to reduce the difficulties faced by mothers and promote their empowerment, prompt diagnosis followed by appropriate treatment with sufficient explanation is essential. Developing a proper diagnostic algorithm and criteria for VEO-IBD would lead to earlier diagnosis, and management guidelines would also implement more effective and safer management for this vulnerable group [7]. Although resources for VEO-IBD are still limited, for severe cases, referral to a specialized institution should be considered. In Japan, diagnostic flow for VEO-IBD, which could be a monogenic IBD, has been standardized as a national project and has been advertised [22]. Multicenter collaboration for the diagnosis of monogenic IBD, characterization of VEO-IBD, and identification of required social support is ongoing, and we expect these networks will facilitate the referral of VEO-IBD patients to more specialized institutions.
The second is support for the creation of a social welfare net that provides long-term, multifaceted support after understanding the wide range of difficulties that mothers of children with VEO-IBD may face. Most mothers did not continue to be lost by the difficult experiences, but instead began to make efforts for their children. They approached medical professionals, studied the disease, and cooperated with their families to continue managing their children’s health at home. The mothers also made a wide range of efforts such as negotiating with the school and getting involved in promoting their children’s social aspects [23]. While this is a process of improving the situation and creating connections with those around them, and empowering them, it is also true that without mothers’ enormous efforts, they may not receive the necessary support and treatment for their children. In particular, parents of children with chronic disease often face various difficulties including a lack of cooperation from schools or information on their children’s disease [24,25]. Therefore, the challenges faced by mothers of children with VEO-IBD should be fully understood, and social support system for young children with intractable gastrointestinal disorders should be implemented in conjunction with other chronic intractable diseases [26].
The third is support for families that support mothers. Family is the greatest source of support for most mothers and promotes empowerment. However, many mothers found that they were stressed by the lack of understanding of family members who should be the source of support, and that they might be also raising their child’s siblings concurrently. Better medical adherence for children and adolescents was observed in functioning families [27], and family functioning appeared to contribute to child’s health. To support mothers of children with VEO-IBD, it is important to evaluate the family’s functioning and to promote the creation of a cooperative system that allows the family to support the child so that the mother does not have to bear the burden of care alone. To prevent mothers from being solely responsible for risky treatment choices and continuing care at home, it is necessary for medical professionals to interact with family members other than the mother and to create opportunities to encourage understanding of the disease and treatment, and to support the creation of a cooperative system that allows the family to support the child. In addition, interviews by a clinical psychologist or medical social workers may clarify the types of support families may require supporting children with VEO-IBD as families.
Further, limited narratives about peer support among mothers of children with VEO-IBD may indicate that their expectations for support primarily center around family, medical personnel, or social welfare rather than peers. The importance of peer support for parents of children with rare or intractable diseases has been reported [28]; however, there have been few reports on the connections between families of children with VEO-IBD. There may be a latent need for parents who cannot meet or share their feelings. We believe that evaluating the need for peer support and creating the platform either by face-to face or by social network services should be considered as a future project.
This study investigated the experiences and process of empowerment of mothers raising children with VEO-IBD. However, it had certain limitations. This was a single center study with a small number of mothers conducted at a pediatric IBD center in metropolitan Tokyo, Japan. Participants were mothers of patients assessed as emotionally stable by a caring physician, and their children’s conditions were relatively stable at the time of the interviews. Thus, selection bias may have affected the results. In addition, this study did not consider the current age of the children, disease activity, duration of illness, or the level of support from other family members, which may have influenced the results. Further research on mothers and children under various conditions is required to further clarify their experiences and processes of empowerment.
In conclusion, mothers of children with VEO-IBD face various difficulties; however, through their efforts and the support of others, they become empowered to improve their circumstances and grow as individuals. Nevertheless, they continue to face difficulties with changes in the medical conditions and situations of their children at different life stages. Mothers continue to make efforts with their families, and further empowerment is achieved in repetitive cycles.

Funding Source

This study was supported by a National Grant-in-Aid for the National Center for Child Health and Development (grant number 2021C-37 to Yokoo M) from the Japanese Ministry of Health, Labour, and Welfare.

Conflict of Interest

No potential conflict of interest relevant to this article was reported.

Data Availability Statement

Data are available upon reasonable request.

Author Contributions

Conceptualization: Yokoo M, Nomura S, Arai K. Data curation: Yokoo M, Takeuchi I, Shimizu H, Arai K. Formal analysis: Yokoo M, Fukui S. Funding acquisition: Yokoo M, Arai K. Methodology: Yokoo M, Fukui S, Arai K. Project administration: Arai K. Writing – original draft: Yokoo M. Writing – review & editing: Nomura S, Takeuchi I, Shimizu H, Arai K. Approval of final manuscript: all authors.

Fig. 1.
Flowchart of the modified grounded theory approach. The major steps of the analysis are shown in gray boxes, and detailed steps are shown in white boxes. The gray and white boxes indicate the categories and detailed methods, respectively. The modified grounded theory approach was employed according to the direction of the arrows.
ir-2024-00048f1.jpg
Fig. 2.
Process of empowerment in mothers of children with very-early-onset-inflammatory bowel disease. Transcribed categories in each process are included with the number of mothers who related them.
ir-2024-00048f2.jpg
Table 1.
Interview Guide
1. Situation and feelings of mothers
 · Clinical course of the child’s illness and treatment.
 · Feeling of mothers when inflammatory bowel disease was diagnosed, child was hospitalized, and after discharge.
 · Life situation and feelings of mothers (child’s healthcare, family relationships [husband, siblings], and social life at work and home).
2. Empowerment
 · What was difficult, what was constraining, and how did you cope with it?
 · What gave you strength and support?
3. Support and assistance from medical personnel
 · What do you think about the involvement of medical personnel?
 · What kind of support would you like?
Table 2.
Summary of Study Participants
Mother Age of mother (yr) Sex Disease activity Disease diagnosis Age at onset Current age (yr) Sibling(s) Family type
A 50s Boy Remission-mild Crohn’s disease 4 mo 12 Older brother Two-household
B 40s Boy Remission-mild Crohn’s disease 3 yr 9 Older brother Nuclear
C 30s Boy Moderate Crohn’s disease 2 mo 11 Younger sister Nuclear
D 40s Girl Remission-mild Crohn’s disease with perianal disease 3 mo 9 Younger sister Nuclear
E 30s Girl Moderate Crohn’s disease 6 mo 12 Older brother Mother-and-child
F 50s Girl Remission Ulcerative colitis 4 yr 15 Older sister and older brother Nuclear
G 50s Girl Moderate Ulcerative colitis and primary sclerosing cholangitis 3 yr 12 Younger sister Mother-and-child
Two-household
H 30s Boy Moderate Crohn’s disease with perianal lesion 1 yr 9 Younger sister Nuclear
I 30s Girl Moderate Ulcerative colitis 2 yr 8 Older sister Nuclear
J 30s Girl Remission Ulcerative colitis and primary sclerosing cholangitis 14 Older sister, older brother, and younger brother Nuclear
K 40s Boy Remission Crohn’s disease 1 yr 10 Younger sister Nuclear
L 50s Girl Remission Crohn’s disease 2 yr 8 Younger sister Nuclear
M 40s Boy Remission Crohn’s disease 3 yr 12 Younger sister Nuclear
N 40s Boy Moderate Crohn’s disease with perianal lesion 5 yr 10 Older brother Mother-and-child
O 40s Boy Remission Ulcerative colitis 5 yr 11 None Mother-and-child
Table 3.
Categorized Interview Results: Difficulty
Category Subcategory No. of mothers No. of narratives
Nonspecialized hospital-related difficulties Neglected 7 21
Lack of professional management 6 33
Repetitive hospital transfers 7 14
Treatment without caring for daily life 2 7
Not knowing the appropriate hospital/doctor 6 8
No definite diagnosis 13 43
Diagnosis-related difficulties Shock of diagnosis of inflammatory bowel disease (IBD) 11 26
Negative image of IBD 6 14
Treatment-related difficulties Worsening of symptoms 15 47
Poor response to treatment 15 32
Repetitive hospitalization 5 8
Fear and hesitation to risky treatment 8 39
Confusion with available information 4 6
Mental pain in caring for a child patient 15 37
Presence of another disease 6 11
Medical personnel-related difficulties Refrain from medical personnel 5 10
Hurt by the words, behaviors, and decisions of medical personnel 1 3
No choice but to follow the decisions of medical personnel 5 6
Hospitalization-related difficulties Shock of hospitalization 6 12
Difficulty and distress of accompanying to child during hospitalization 6 18
Difficulty and distress of visiting hospitalized child 10 50
Home care-related difficulties Concern about expanding child’s activities 6 17
Difficulties in preparing meals with restriction 7 25
Difficulty in administering medication 6 19
Mental pain in persuading child 4 7
Heavy responsibility of childcare 8 17
Financial burden 5 8
Burden of hospital visits 5 12
Fear of relapse 5 21
Difficulties related to preschools and schools Anxiety before entering school (including nursery, kindergarten, and primary school) 4 10
Difficulties related to meals at school 4 9
Difficulties related to commuting to and from school 11 21
Difficulty in obtaining support from school personnel 3 3
Family-related difficulties Family members who cannot understand or rely on each other 11 43
Difficulty of overlapping pregnancies, births, and childcare for siblings 11 42
Family illness 3 6
Child-related difficulties Difficulty in understanding child’s condition or feeling 4 9
Negative personality changes in child 8 9
Child’s negative comments regarding illness 3 10
Anxiety regarding the future 10 26
Mother’s difficulties Sense of helplessness 2 3
Feeling guilty 5 11
Anxiety 5 6
Difficulty in being strong 2 4
Poor physical and mental condition 6 14
No one close to me has experienced 4 10
No one to talk to 5 13
Difficulty in balancing work and care 7 16
Table 4.
Categorized Interview Results: Effort
Category Subcategory No. of mothers No. of narratives
Effort to access better medical care Search for and visit a specialist hospital 12 39
Choosing treatment while conflicting 6 10
House-moving for continuous medical care 2 5
Effort to understand and accept the disease Obtaining information about the disease 9 18
Prepared to support treatment 5 7
Effort for child to keep receiving medical care Continued visitation during hospitalization 10 24
Continued hospital visits 5 7
Application for support system 1 2
Effort to work with healthcare providers Reaching out to healthcare personnel 8 19
Effort to continue care at home Devices around meals 4 13
Ingenuity of administering medication 4 6
Close observation 3 7
Ingenuity in home care 2 8
Extending the range of child’s activities 2 4
Effort to work with families Stepping up to the family members 4 4
Balancing caring for patients and siblings 4 4
Effort to support commuting to and from school Approach to school personnel 8 17
Assisting the commute to and from school 8 19
Effort to support children’s physical and mental development Supporting the challenge 3 11
Keeping proper age- or condition-appropriate distance 1 6
Helping child to cope with disease 3 4
Choice with respect to child’s wishes 2 6
Efforts of mother in maintaining own physical and mental condition Thinking and acting positively 8 23
Consultation of experienced person 2 3
Continuation of work and adjustment of work style 3 8
Table 5.
Categorized Interview Results: Support
Category Subcategory No. of mothers No. of narratives
Courage from the child Strength of child 5 24
Growth of child 9 16
Expansion of child’s society 5 10
Understanding of disease 6 10
Support from experienced people Mother raising a child with inflammatory bowel disease 3 14
Patient association exchanges 2 7
Interaction with mother in the same room during hospitalization 3 5
Interaction with person with intractable disease 1 3
Support from medical personnel Support from doctors 10 28
Support from nurses 9 17
Support from psychologist 5 7
Support from child life specialist 1 7
Support from childcare workers 1 1
Support from family Support from parents 13 41
Support from husband 10 28
Cooperation from child’s siblings 9 13
Support from sisters 4 3
Appropriate medical care Managing team with a sense of security 8 15
Shared decision-making 4 15
Treatment that supports life in the short- and long-term 5 8
Support from school personnel Support from school teachers 4 7
Support from classmates 2 7
Support from school nurse 1 6
Support from education center 1 3
Support from nutritionist 2 2
Other support Support from friends 4 8
Support from colleagues 5 9
Support for private facilities 3 4
Table 6.
Categorized Interview Results: Empowerment
Category Subcategory No. of mothers No. of narratives
Changing and improving situations Connection to specialized hospital 12 19
Confirmation of diagnosis 11 19
Progress of treatment 8 12
Improvement of symptoms 9 36
Daily life not disturbed by disease 2 20
Better connections with others Fulfillment of work 11 10
Trust in hospital 4 7
Improvement of marital relationship 2 4
Connecting with people with experience 4 7
Improved coping skill Proactive request of support 6 10
Reasonable diet and medication management 3 4
Reduce burden with habituation 7 13
Gaining knowledge about disease 2 2
Personal growth Appreciation for those around you 7 16
Taking care of your mind and body 4 5
Realization of gratitude for health 5 6
Understanding the feelings of others 2 2
Gaining mental strength 8 12
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      Process of empowerment in mothers of children with very-early-onset inflammatory bowel disease: a qualitative study
      Image Image
      Fig. 1. Flowchart of the modified grounded theory approach. The major steps of the analysis are shown in gray boxes, and detailed steps are shown in white boxes. The gray and white boxes indicate the categories and detailed methods, respectively. The modified grounded theory approach was employed according to the direction of the arrows.
      Fig. 2. Process of empowerment in mothers of children with very-early-onset-inflammatory bowel disease. Transcribed categories in each process are included with the number of mothers who related them.

      Fig. 1.

      Fig. 2.

      Process of empowerment in mothers of children with very-early-onset inflammatory bowel disease: a qualitative study
      1. Situation and feelings of mothers
       · Clinical course of the child’s illness and treatment.
       · Feeling of mothers when inflammatory bowel disease was diagnosed, child was hospitalized, and after discharge.
       · Life situation and feelings of mothers (child’s healthcare, family relationships [husband, siblings], and social life at work and home).
      2. Empowerment
       · What was difficult, what was constraining, and how did you cope with it?
       · What gave you strength and support?
      3. Support and assistance from medical personnel
       · What do you think about the involvement of medical personnel?
       · What kind of support would you like?
      Mother Age of mother (yr) Sex Disease activity Disease diagnosis Age at onset Current age (yr) Sibling(s) Family type
      A 50s Boy Remission-mild Crohn’s disease 4 mo 12 Older brother Two-household
      B 40s Boy Remission-mild Crohn’s disease 3 yr 9 Older brother Nuclear
      C 30s Boy Moderate Crohn’s disease 2 mo 11 Younger sister Nuclear
      D 40s Girl Remission-mild Crohn’s disease with perianal disease 3 mo 9 Younger sister Nuclear
      E 30s Girl Moderate Crohn’s disease 6 mo 12 Older brother Mother-and-child
      F 50s Girl Remission Ulcerative colitis 4 yr 15 Older sister and older brother Nuclear
      G 50s Girl Moderate Ulcerative colitis and primary sclerosing cholangitis 3 yr 12 Younger sister Mother-and-child
      Two-household
      H 30s Boy Moderate Crohn’s disease with perianal lesion 1 yr 9 Younger sister Nuclear
      I 30s Girl Moderate Ulcerative colitis 2 yr 8 Older sister Nuclear
      J 30s Girl Remission Ulcerative colitis and primary sclerosing cholangitis 14 Older sister, older brother, and younger brother Nuclear
      K 40s Boy Remission Crohn’s disease 1 yr 10 Younger sister Nuclear
      L 50s Girl Remission Crohn’s disease 2 yr 8 Younger sister Nuclear
      M 40s Boy Remission Crohn’s disease 3 yr 12 Younger sister Nuclear
      N 40s Boy Moderate Crohn’s disease with perianal lesion 5 yr 10 Older brother Mother-and-child
      O 40s Boy Remission Ulcerative colitis 5 yr 11 None Mother-and-child
      Category Subcategory No. of mothers No. of narratives
      Nonspecialized hospital-related difficulties Neglected 7 21
      Lack of professional management 6 33
      Repetitive hospital transfers 7 14
      Treatment without caring for daily life 2 7
      Not knowing the appropriate hospital/doctor 6 8
      No definite diagnosis 13 43
      Diagnosis-related difficulties Shock of diagnosis of inflammatory bowel disease (IBD) 11 26
      Negative image of IBD 6 14
      Treatment-related difficulties Worsening of symptoms 15 47
      Poor response to treatment 15 32
      Repetitive hospitalization 5 8
      Fear and hesitation to risky treatment 8 39
      Confusion with available information 4 6
      Mental pain in caring for a child patient 15 37
      Presence of another disease 6 11
      Medical personnel-related difficulties Refrain from medical personnel 5 10
      Hurt by the words, behaviors, and decisions of medical personnel 1 3
      No choice but to follow the decisions of medical personnel 5 6
      Hospitalization-related difficulties Shock of hospitalization 6 12
      Difficulty and distress of accompanying to child during hospitalization 6 18
      Difficulty and distress of visiting hospitalized child 10 50
      Home care-related difficulties Concern about expanding child’s activities 6 17
      Difficulties in preparing meals with restriction 7 25
      Difficulty in administering medication 6 19
      Mental pain in persuading child 4 7
      Heavy responsibility of childcare 8 17
      Financial burden 5 8
      Burden of hospital visits 5 12
      Fear of relapse 5 21
      Difficulties related to preschools and schools Anxiety before entering school (including nursery, kindergarten, and primary school) 4 10
      Difficulties related to meals at school 4 9
      Difficulties related to commuting to and from school 11 21
      Difficulty in obtaining support from school personnel 3 3
      Family-related difficulties Family members who cannot understand or rely on each other 11 43
      Difficulty of overlapping pregnancies, births, and childcare for siblings 11 42
      Family illness 3 6
      Child-related difficulties Difficulty in understanding child’s condition or feeling 4 9
      Negative personality changes in child 8 9
      Child’s negative comments regarding illness 3 10
      Anxiety regarding the future 10 26
      Mother’s difficulties Sense of helplessness 2 3
      Feeling guilty 5 11
      Anxiety 5 6
      Difficulty in being strong 2 4
      Poor physical and mental condition 6 14
      No one close to me has experienced 4 10
      No one to talk to 5 13
      Difficulty in balancing work and care 7 16
      Category Subcategory No. of mothers No. of narratives
      Effort to access better medical care Search for and visit a specialist hospital 12 39
      Choosing treatment while conflicting 6 10
      House-moving for continuous medical care 2 5
      Effort to understand and accept the disease Obtaining information about the disease 9 18
      Prepared to support treatment 5 7
      Effort for child to keep receiving medical care Continued visitation during hospitalization 10 24
      Continued hospital visits 5 7
      Application for support system 1 2
      Effort to work with healthcare providers Reaching out to healthcare personnel 8 19
      Effort to continue care at home Devices around meals 4 13
      Ingenuity of administering medication 4 6
      Close observation 3 7
      Ingenuity in home care 2 8
      Extending the range of child’s activities 2 4
      Effort to work with families Stepping up to the family members 4 4
      Balancing caring for patients and siblings 4 4
      Effort to support commuting to and from school Approach to school personnel 8 17
      Assisting the commute to and from school 8 19
      Effort to support children’s physical and mental development Supporting the challenge 3 11
      Keeping proper age- or condition-appropriate distance 1 6
      Helping child to cope with disease 3 4
      Choice with respect to child’s wishes 2 6
      Efforts of mother in maintaining own physical and mental condition Thinking and acting positively 8 23
      Consultation of experienced person 2 3
      Continuation of work and adjustment of work style 3 8
      Category Subcategory No. of mothers No. of narratives
      Courage from the child Strength of child 5 24
      Growth of child 9 16
      Expansion of child’s society 5 10
      Understanding of disease 6 10
      Support from experienced people Mother raising a child with inflammatory bowel disease 3 14
      Patient association exchanges 2 7
      Interaction with mother in the same room during hospitalization 3 5
      Interaction with person with intractable disease 1 3
      Support from medical personnel Support from doctors 10 28
      Support from nurses 9 17
      Support from psychologist 5 7
      Support from child life specialist 1 7
      Support from childcare workers 1 1
      Support from family Support from parents 13 41
      Support from husband 10 28
      Cooperation from child’s siblings 9 13
      Support from sisters 4 3
      Appropriate medical care Managing team with a sense of security 8 15
      Shared decision-making 4 15
      Treatment that supports life in the short- and long-term 5 8
      Support from school personnel Support from school teachers 4 7
      Support from classmates 2 7
      Support from school nurse 1 6
      Support from education center 1 3
      Support from nutritionist 2 2
      Other support Support from friends 4 8
      Support from colleagues 5 9
      Support for private facilities 3 4
      Category Subcategory No. of mothers No. of narratives
      Changing and improving situations Connection to specialized hospital 12 19
      Confirmation of diagnosis 11 19
      Progress of treatment 8 12
      Improvement of symptoms 9 36
      Daily life not disturbed by disease 2 20
      Better connections with others Fulfillment of work 11 10
      Trust in hospital 4 7
      Improvement of marital relationship 2 4
      Connecting with people with experience 4 7
      Improved coping skill Proactive request of support 6 10
      Reasonable diet and medication management 3 4
      Reduce burden with habituation 7 13
      Gaining knowledge about disease 2 2
      Personal growth Appreciation for those around you 7 16
      Taking care of your mind and body 4 5
      Realization of gratitude for health 5 6
      Understanding the feelings of others 2 2
      Gaining mental strength 8 12
      Table 1. Interview Guide

      Table 2. Summary of Study Participants

      Table 3. Categorized Interview Results: Difficulty

      Table 4. Categorized Interview Results: Effort

      Table 5. Categorized Interview Results: Support

      Table 6. Categorized Interview Results: Empowerment

      Table 1.

      Table 2.

      Table 3.

      Table 4.

      Table 5.

      Table 6.

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