Identifying the difficulties faced by parents of children with colostomy due to hirschsprung's disease: a phenomenological study

doi:10.21203/rs.3.rs-1985953/v1

Download PDF

Research Article

Identifying the difficulties faced by parents of children with colostomy due to hirschsprung's disease: a phenomenological study

https://doi.org/10.21203/rs.3.rs-1985953/v1

This work is licensed under a CC BY 4.0 License

Version 1

posted

You are reading this latest preprint version

Purpose: This study was carried out to determine the difficulties faced by the parents of children with colostomy due to Hirschsprung's Disease.

Methods: This phenomenological study was conducted. The study included the parents of nine different children with colostomys from October 2017 to January 2018 and used the purposeful sampling technique. Data was collected by voice recorder and camera utilizing the in-depth interview method and a “Semi-Structured Interview Form.” Malterud's systematic text condensation method was used to evaluate the data.

Results: The study identified three main themes of “first encounter”, “difficulties” and “coping”; and twelve subthemes regarding the difficulties experienced by parents of children with colostomy. However, it was determined that parents accepted this process by using coping methods that include positive attitudes and spiritual beliefs.

Conclusions: Starting with the decision to open a colostomy on children, it is recommend for parents to have education by professional counselling on colostomy care, psychological counseling and social groups, family centered care that help expressing their feelings.

Colostomy

parents

difficulties

experienced

children

Hirschsprung disease

Hirschsprung's disease occurs in approximately one in every 5000 live-born babies. It is a developmental disorder of the enteric nervous system and is characterized by the absence of ganglion cells in the myenteric and submucosal plexuses of the intestine [1]. In the surgical treatment of Hirschsprung's disease, a colostomy is opened to remove the aganglionic bowel and reconstruct the intestinal tract. Hirschsprung, congenital anomalies, anal atresia, and gastrointestinal system disorders [1–4]. Colostomy affects children and their families negatively, depending on changes in physiological structures (odor, stool leakage, skin irritation, gas), psychological and socio-cultural aspects (adapting the adapter, putting on and carrying the bag, swelling of the bag and complications of colostomy) and age [5]. The children may experience psychosocial changes, including physical restrictions, body image changes, depression, eating and sleeping disturbances, motivational decline, and inability to concentrate, curtailing activities appropriate to their developmental stage. Though children with a colostomy are more closely monitored, cared for, and treated by pediatric centers, it is important for their parents to participate in this process as well [6, 8].

The parents and/or child's acceptance and adaptation to the ostomy is important in preventing complications. The pediatric surgery team’s important duties and responsibilities include providing care and treatment with a multidisciplinary approach, gaining physical and psychosocial self-efficacy, follow-up, counseling and training. Colostomy nurses provide one-to-one care to patients and their families during rehabilitation, aiding the patient in developing healthy lifestyle behaviors and adapting to the new lifestyle of the colostomy [9, 10]. Studies report that the families of children with colostomy often do not receive adequate follow-up, care and support after surgery and do not receive service from a single health center when complications arise [11–13]. They experience increased stress and burnout, somatic complaints such as sleep problems, pain and weakness, disruption in daily living activities, economic difficulties, deterioration of family relations, overprotective attitudes towards the child, social isolation and anxiety about the future [8, 14–16]. In this context, holistic care practices should be implemented to prevent the formation of prejudice against colostomy in children and parents, taking into account the role of the mother to prevent them from being dragged into social isolation and anxiety about the future [8, 10, 17]. Given the limited studies in the literature of parents of children with colostomy (ostomy), this study was carried out with the aim of determining the difficulties experienced by the parents of children with colostomy and suggesting solutions and increasing their quality of life. There are limited studies with parents who have a child with a colostomy (ostomy) due to Hirschsprung's disease. For this reason, this study aims to determine the difficulties faced by the parents of children with colostomy due to Hirschsburg disease in the adaptation process to the use of colostomy; It was planned and carried out with the aim of providing professional counseling, pre- and post-operative education and social support, especially family-centered care.

Study design

This study used a phenomenological study model, a qualitative research method that enables individuals to reveal their experiences, perceptions, and the meanings they attribute to a phenomenon. Phenomenological research may not achieve definite and generalizable results. However, it can show examples, explanations, and experiences that offer subjective information about a phenomenon to better understand it. Thus, it supports both the scientific field and the clinical practice [18, 19].

Population and Sample

The study used criterion sampling, a purposeful sampling method. The study universe consisted of the parents of 45 patients diagnosed with Hirschsprung’s Disease between 01.11.2016 and 01.11.2017 in the Pediatric Surgery Clinic of XXX Training and Research Hospital. The sample included parents who provided care at home for at least one month, had no speech and hearing problems, could speak/understand Turkish, and were willing to participate in the study. However, the study was completed with 17 parents (9 mothers, 8 fathers) of 9 children with colostomy (one father was out of town). Most of the children were eligible for emergency colostomy surgery.

After ethical and institutional permissionswere granted, the study was conducted between November 2017 and January 2018. The research question and purpose determined the sample size. New information not emerging in the interviews, repetition of data, and inability to obtain new data were used as criteria for ending the interviews [18, 19]. During the research, data saturation was reached when repeated answers to the questions were consistently obtained during the interviews, and the interviews were then ended.

Instruments

“Descriptive Information Form” and “Semi-structured Interview Form” forms were used as data collection forms.

Descriptive Information Form: The descriptive information form included questions regarding age, gender, marital status, education level, family type, social security status, income status, colostomy care, and individuals affected.

Semi-Structured Interview Form: To collect the data, a semi-structured interview form was prepared with the support of the literature on the subject [8, 9, 10, 20]. The advice of two experts with experience in qualitative research contributed to the creation of this form. It included four questions examining the physical, psychological and social difficulties experienced by the parents after the colostomy was introduced:

What were your first reactions to your child's decision to have surgery?
How did you feel about your child getting a colostomy before and after the surgery?
Can you explain the changes in your daily life after your child had the colostomy?
What is the most difficult issue in your child's colostomy care?

Setting

To test the interview technique used in the study and the clarity of the questions, two preliminary interviews were made and the final version was created. The researchers gained experience by participating in the "Qualitative Analysis, Interview Techniques, and Coding Course" before the study. Before discharge from the hospital, parents were informed about the study; those who volunteered to participate were later contacted by phone. Parents were interviewed face-to-face. The interviews were held at the time determined by the parents, in the clinical meeting or in the break room. Measures were taken to ensure that the meeting was held in a comfortable environment (silencing the phones, reserving the room, posting notes, etc.). Researcher and psychologist took part in each interview. The parents were interviewed separately. Face-to-face interviews with parents. Before starting the interview, the researcher obtained written and verbal consent from the parents after informing them of the purpose, methods and confidentiality measures of the study. The reactions and behaviors of the parents and notes on the setting and meeting breaks were recorded in the interview guide throughout all the interviews. A voice recorder and camera were used during the interviews, The interviews lasted 25–60 minutes.

Ethical considerations

Necessary written permissions were obtained from the clinical research ethics committee of XX hospitals (19/01/2017/01) and the institution forming the sample for the study. In accordance with the Declaration of Helsinki, the researcher informed each parent about the study using a "Voluntary Information Form". In the interviews, written and verbal consents were obtained from the parents by explaining that a voice recorder and camera device would be used and personal information would be kept confidential.

Statistical analysis

The evening of the interview, 95 substantial expressions obtained from the audio recordings were documented in writing, and Malterud's (2012) phenomenological method of interpretation was used to evaluate the data [19]. This method consisted of (a) formulating a total impression, including themes, (b) identifying and sorting meaning units, including themes and codes, (c) condensing data, from code to meaning, and (d) synthesisis, froincluding formulating descriptions and concepts. The main themes and sub-themes were created based on the researcher’s observation notes; the opinions of two independent psychologists experienced in qualitative study data analysis were used to ensure the validity of the meanings and themes. Themes and sub-themes were evaluated and clarified by a third experienced researcher in the field. The researcher's observation notes were also taken into account in the data evaluation process. Figure 1 presents cross-theme associations.

Limitation

It was difficult to reach the designated sample number due to the high number of Syrian families in the region where the study was conducted.

The descriptive characteristics of the parents are presented in Table 1. The study consisted of 17 parents (9 mothers, 8 fathers) of 9 children with a colostomy; mothers were between the ages of 19 and 55, and fathers were between the ages of 28 and 63. The majority of the parents (n = 12) were between the ages of 30 and 65, primary-secondary school graduates (n = 15), married (n = 9) with a nuclear family structure and health insurance, and were informed before and after the surgery about colostomy care (n = 17). The mothers were housewives (n = 9) between the ages of 19 and 55; most were primary school graduates (n = 7) capable of delivering colostomy care without any support (n = 7). Most of the fathers were primary school graduates (n = 5) and stated they took care of the colostomy together with their spouses (n = 6). The age range of the children with colostomy was between 4 months and 9 years; five were girls and four were boys. The data obtained from the interviews included 3 main themes and 13 sub-themes. The main themes were determined to be “first meeting”, “difficulties” and “coping”. (Table 1).

Table 1

The descriptive characteristics of the parents
	Parents number		Age of parents	Child's age (month/ year)	Educational status	Caregiver
Parents 1	1	Father	28	7 month	Secondary school	Mother
Parents 1	2	Mother	19	7 month	Primary school	Mother
Parents 2	3	Father	25	3 years	Primary school	Mother
Parents 2	4	Mother	32	3 years	Primary school	Mother
Parents 3	5	Father	28	5 years	University	Mother
Parents 3	6	Mother	36	5 years	Secondary school	Mother
Parents 4	7	Father	35	4 years	Primary school	Mother
Parents 4	8	Mother	23	4 years	Primary school	Mother
Parents 5	9	Father	29	4 years	Secondary school	Mother
Parents 5	10	Mother	31	4 years	Primary school	Mother
Parents 6	11	Father	35	5 years	Primary school	Mother
Parents 6	12	Mother	34	5 years	Primary school	Mother
Parents 7	13	Father	40	7 years	Primary school	Father
Parents 7	14	Mother	55		Secondary school	Mother
Parents 8	15	Father	63	4 months	Illiterate	Father
Parents 8	16	Mother	33	4 months	Primary school	Mother
Parents 9	17	Mother	34	9 years	Secondary school	Mother

Table 1

Themes and subthemes
Themes	Subthemes	n
First meeting	Emotional distress	13
	Anxiety	7
	Shame	10
	Helplessness	8
	Uncertainty	6
	Fear	8
Difficulties	Difficulty in care	12
	Social isolation	9
	Economic problems	4
Coping	Acceptance	6
	Positive outlook	5
	Spiritual beliefs	10
	Fatalism	13

Theme 1: First meeting

Subtheme 1: Emotional distress

In this section, parents described their emotional distress on first encountering their child after the placement of the colostomy.

"I was so sad, it was like my world had collapsed. I encountered something I had never seen before. I encountered something that I had never seen in our family. Why did my child have this problem?''(10th Person, Mother, 31y)

''We were really affected by it. We were sleep deprived and stressed. My husband works outdoors. Everyone has a job, or something to do. I was always alone. I always thought about “What am I going through?” It was tough. Sometimes I wonder if God is testing us. The children of those who had a baby at the same time as me are healthy. I am always stressed, I do not want to eat, I cannot sleep.'' (16th Person, Mother, 33y)

Sub-theme 2: Despair

Parents of children with colostomy described feeling helpless because of the colostomy, that it was very difficult for their children to live with a colostomy, and that they had no hope because there was nothing they could do.

''When he scratches, his intestines come out, and it bleeds. I feel very sorry for him too. There is nothing I can do.” (10th Person, Mother, 31y)

“So whatever we did was useless, it shook us a little. Psychologically it really shook us. In other words, you are always on the brink of crying, there are days when you cannot keep yourself together. There is nothing we can do. I want to give the whole world to my child… Now my child is withering in front of me, I witness all of it. My hands are tied, and I cannot do anything.” ( 1th Person, Father, 28 y)

Sub-theme 3: Fear

In this study, parents describe their fears of something happening to their child due to the colostomy, of encountering unexpected results due to surgery, or something happening due to how young their child is.

"I was very scared. He was born when he was seven months old, so little, and had an operation… I was afraid, I was afraid that something bad would happen." (4th Person, Mother, 32y)

''I was so scared. When he came out of the operation, I was very afraid. My whole body was trembling when I saw this place.” (17th Person, Mother, 34y)

Sub-theme 4: Uncertainty

Parents of children with colostomy expressed uncertainty regarding whether their child would survive.

"If he gets colostomy and something happens to him, I can't take it. If he doesn’t and something bad happens again, I don't think I can watch him suffer in front of me either. Both are a big responsibility; I cannot pick either of them. I’m stuck between the two (15th Person, Father, 63y)

Sub-theme 5: Worry

Parents describe anxiety surrounding not having encountered a colostomy before or unexpected events brought about by the colostomy; they express feelings of uncertainty and helplessness and lack of knowledge in the post-operative period. This situation has a negative effect on the parents.

“I always asked others. When I was at home, I always thought about this. And when I went to the hospital, if I saw a child in someone’s arms I immediately asked what surgery they had, and how it went. I have never seen such an operation performed on babies (3rd Person, Father, 25 y)

''... and the doctor says that the operation will take 6 hours. But he may or may not get through, so we got more and more depressed… The doctor says it's okay, and I ask "What do you mean it is okay? Maybe you are used to it, but how can I stay calm when my child has his intestine is 10 cm outside of his body?" (11th Person, Father, 35 y)

Sub-theme 6: Shame

The majority of parents of children with colostomy experienced embarrassment due to changes in their social life.

“Even when guests came over he would hide the colostomy. He was embarrassed. He gets embarrassed when we go somewhere. He gets embarrassed when we go to the park. I'm afraid to let him ride a bike, thinking the same thing would happen again... I couldn't take my son to school, I was ashamed.'' (12th Person, Mother, 34y)

“People want to see his colostomy. I don't want to show it. It smells. We went through so many difficulties.” (16th Person, Mother, 33y)

Theme 2: Difficulties

Problems surrounding colostomy care, social isolation and economic problems were sub-themes in the difficulties experienced by colostomy families in the post-op period.

Sub-theme 7: Problems in care

Changes occur in families when a colostomy is introduced to a child. This study determined that during the growth and development stages of the child, difficulties in care arose due to factors such as the colostomy bag bursting, difficulty changing the colostomy bag, and colostomy bag non-adherence.

''Not drying. Washing it was not harmful. I used to wash it daily but it wouldn't dry. I would put a lot of cloths on it, dry it. I would check later and it would get wet again. It would not stick when it was wet, I had a hard time drying it… I was hardly even changing his clothes, it would flow from the bottom get dirty, I would change sheets a lot, everything was difficult.'' (4th Person, Mother, 32y)

''Sticking it was hard. I thought it might damage the skin. Sometimes it would burst. When the child was moving around or he was full if the child toss and turn the bag would explode. I was afraid that it could cause damage when it blew up.” (8th Person, Mother, 23y)

Sub-theme 8: Social isolation

The parents stated that their social life changed due to colostomy, and they mostly neglected their other children because they constantly looked after the child with colostomy.

'You can't go anywhere. We couldn't go anywhere because the child could catch a disease.” (5th Person, Father, 28y)

''I couldn't do any work. I have always taken care of the child. We always took care of him because he was sick… I couldn't go anywhere. The child would cry nonstop. He cried a lot.” (6th Person, Mother, 36y)

Sub-theme 9: Economic issues

Most of the parents in this study stated that they used colostomy bags more during the developmental stages of their child and financial difficulties because they had to pay for the colostomy materials themselves.

'Made in Europe. We made an agreement with the medical store, so we were buying from there. The last time we bought it for 3.5 TL, then they increased the price up to 6 TL. We couldn’t find it anywhere else, I’ve gone to all the pharmacies. We were desperate, we had to. '' (7th Person, Father, 35y)

Theme 3: Coping

After their child had a colostomy, parents in this study said they accepted it by trying to view it positively or through spiritual beliefs: fatalism (see Subtheme 12).

Sub-theme 10: Acceptance

Parents stated that they later accepted their child’s colostomy, although it was initially difficult for a short time.

“…after that I got used to it.” (6th Person, Mother, 36y)

“A lot has changed, you automatically become unhappy. But we did not hurt each other. we did not get angry or upset. In fact, our bond got stronger.” (7th Person, Father, 35y)

Sub-theme 11: Looking on the positive side

Parents in the study stated that even though they had difficulty in accepting the presence of colostomy at first, understanding that worse could happen to their childrenlet to their adapting to it after a short while.

''...thank goodness, at least it is temporary, I said. I hope this too will pass, and there will be no more problems.'' (9th Person, Father, 29y)

Sub-theme 12: Spiritual beliefs: fatalism

In this study, parents who have a child with colostomy stated that they view it as Allah's will and accept it by believing that it is their destiny.

“…..I said it is from God.” (2nd Person, Mother, 19y)

"There is nothing we can do, so we have to put our trust in Allah... "So we pray to Allah to either take him or have mercy." (11th Person, Female, 35y)

“I left everything to God. I've had no worries. I trust in Allah.” (14th Person, Mother, 55y)

This study provides a perspective on understanding the difficulties experienced by the parents of children with colostomy. Three main themes were identified in the study. The first meeting is difficulties and coping.

First meeting

Parents stated that it is a bad and difficult situation for a child living with colostomy bag and said they felt helpless for their child in this situation. They were mainly ashamed of odor while taking care of their children. Reports in the literature have determined that as a result of having pediatric colostomy, parents are embarrassed and experience a diminished quality of life; in most cases, the mother is more affected than father [8, 14, 21]. The literature reports that when parents of children with a colostomy first encounter the colostomy bag, they feel afraid, helpless, uncertain and anxious. Due to body image changes, they do not know what to do. Many experience worries about the disease process and quality of life their child can expect [ 9, 21–23]. In addition, parents of children with colostomy do not know what to do and admit feeling helpless because they see their burden constantly getting bigger.

Emotional distress

This study identifies emotional distress in all parents of children with colostomy; they experience urgent life changes resulting in emotional strain in their daily lives that includes constant sadness, stress, not knowing what to do; and they constantly compare themselves with other parents who have healthy children. Although the parents were informed about the opening of a colostomy before the operation, they were not psychologically ready when they first encountered the colostomy in the postoperative period. Persso et al.(2003) attributed the parents' unpreparedness to the first encounter with colostomy to the lack of education in the preoperative period [24]. Dabas et al. (2016) determined that educating parents with pediatric colostomy video teaching program and Dhanalakshmi (2016) instructional package are effective in colostomy management [25, 26]. Goudarzi et al. (2016) found that the empowerment program significantly reduced the stress levels of parents [21]. David et al. (2020) determined that colostomy patients and their families need training to reduce their psychosocial concerns (eg, coping with an ostomy) as well as learn colostomy care [27]. This study makes clear that in addition to the physical preparations, the parents should be psychologically prepared for their first encounter with the colostomy.

Social isolation

There is no sphincter in the colostomy. Often the child with colostomy believes those around them will be disgusted by the gas output. Often the child with colostomy believes the odor seepage that occurs during the colostomy bag change produces uncontrollable odor and gas release. These factors cause the colostomytized child to withdraw from society [3, 5, 15]. In this study, parents stated that they felt inadequate and ashamed because of their child's colostomy, did not want to show the colostomy to anyone, and felt only they should know about it. In addition, it was determined that the fear of infection in the child, the child's need for parental care, the child's unwillingness to go to school and the family's need to stay at home all the time caused the parents to stay away from the social environment. In the study of Mitchell et al (2007), the theme of embarrassment is simila to the expression of embarrassment in the literature [28]. Brown and Randle's (2005) stated that colostomy reduces the quality of life of individuals and they experience a sense of embarrassment [29]. Ameh et al. (2006) determined that 23% of parents do not accept colostomy due to social isolation [14]. This study found parents of children with colostomy to experience feelings of embarrassment derived from the child’s inability to communicate with other children and fears of uncontrolled gas discharge, leakage, odor, the bursting of the colostomy bag due to increased mobility of the child and the desire not to cause problems to other people; this in turn causes parents to distance themselves and their children from social environments and avoid contact with new people/families.

Difficulties

Caring for colostomy is a difficult and troublesome process for both the caregiver and the patient [9, 27]. In our study, parents described difficulties in caring for the colostomy due to their inexperience and that they applied to the clinic again in the first few weeks after the surgery to receive additional help. In addition, they stated feeling discomfort due to frequent bag changes in problems that develop due to the sticking of the colostomy bag on the skin or the leaking of the bag. Parents also emphasized that they had no time for social life since they spent too much time on colostomy care. It was determined that mothers came to the fore in caring for children with colostomy, while fathers were relatively indifferent to care, citing various negativities. Vural et al (2016) found that patients had difficulties due to frequent bag changes [30]. The results obtained from this study are very similar to those of the study by Vural et al. (2016), Dhanalakshmi (2016), Dabas et al. (2016), David et al. (2020) [25–27, 30]. Parents should not experience psychological difficulties their children experience due to the changing body image and negativities due to poor quality materials. The results of the study show the inadequacy of the training and consultancy services offered parents to ensure that the consumables used in colostomy care in the postoperative period are practical, high quality, economical and accessible. Dabirian et al. (2011), and Ozgediz and Poenaru (2012) stated that parents who stayed in the hospital for a long time could not start their careers or business lives and had financial problems due to expensive materials [24, 31]. Ameh et al. (2006) determined 26% of parents experienced material shortage due to changing their colostomy bags more than five times a day [14]. In this study, the mothers were housewives and most of the fathers were self-employed, such that the family expenses in the presence of colostomy exceeded earnings, posing economic problems. Additionally, the parents experience difficulty in giving care due to the fact that the children often move around and damage the bag or the bag is poor quality or does not readily adhere to skin.

Coping

Coldicutt (2013) and Abbasiasl et al (2021) reported that families' support for each other, social support networks, access to health care and quality of available health care affect parents' coping with this process [7–23]. In this study, most of the parents stated that they consoled themselves with the thought that they would eventually overcome the problems associated with the colostomy, and they tried to get through this hard period by looking on the bright side. Knowing the colostomy is temporary, being highly motivated, believing the child will get better, and the fact that the child is young help parents console themselves and cope. That some children with colostomy are too young to interact socially was another cause for parents to maintain positive attitudes toward the colostomy. Yet the most important thing is whether the parents accept their children as normal and if they can adapt to life with a colostomy. The study suggests parents cannot fully adapt to this situation. In fact, this study, found that parents cannot fully adapt to this situation due to weak social support, financial problems and lack of knowledge.

Once a diagnosis is made, the process of undergoing surgery and the post-surgical period is full of uncertainties. The majority of the parents who participated in the study stated that they could not describe their emotions when their child was diagnosed. Most of the parents were found to be spiritually and mentally strong throughout this process, describing spiritual resources such as praying and believing that they come from God. In their qualitative study, Dabirian et al. (2011) saw no change in the lives of individuals after the colostomy and determined all of them to be spiritually strong [24]. For this reason, it is seen that spiritual beliefs have an important place in facilitating the lives of parents with colostomy.

In the study, it was determined that when parents first encountered colostomy, they experienced emotional difficulties including despair, fear, worry, shame and uncertainty, lack of knowledge about colostomy care, social isolation and economic difficulties. However, it was determined that parents accepted this process by using coping methods that include positive attitudes and spiritual beliefs. Based on these results, in order to cope with the difficulties experienced by the parents and to facilitate the acceptance process; starting from the decision to open a colostomy, education on colostomy care, continuous psychological counseling to facilitate the adaptation process, social groups to help express feelings, and family-centered care are recommended.

Chumpitazi BP, Nurko S (2011) Defecation disorders in children after surgery for Hirschsprung disease. J Pediatr Gastroenterol Nutr 53:75-79.
Lin, Y. C (2016) Nationwide population-based epidemiologic study of hirschsprung's disease in Taiwan. Pediatrics & Neonatology 57(3):165-66.
Colwell JC, Beitz J (2007) Survey of wound, ostomy and continence (WOC) nurse clinicians on colostomyl and peristomal complications: A content validation study. Journal of Wound Ostomy and Continence Nursing 34 (1):57-69.
Pittman J, Rawl S. M, Schmidt C. M, Grant M, Ko C. Y, Wendel C, Krouse, R. S (2008) Demographic and clinical factors related to ostomy complications and quality of life in veterans with an ostomy. Journal of Wound Ostomy & Continence Nursing 35(5):493–503.
Bakal U, Sarac M, Tartar T, Kazez A (2015) Colostomy in children. [Çocuklarda kolostomi] Fırat Medicine Journal/Fırat Tıp Dergisi 20(1):47-50.
Burch J (2005) Psychological problems and stomas: a rough guide for community nurses. Br J Community Nurs 10(5):224-27.
Coldicutt P, Hill B (2013) An overview of surgical stoma construction and its effects on the child and their family. Nurs Child Young People 25(4):26-35.
Yıldız D.B (2015) Psychosocial problems and nursing approaches in children with stoma. [Stomalı çocuklarda görülebilecek psikososyal sorunlar ve hemşirelik yaklaşımları] J Pediatr Nurs-Speacial Topics /Türkiye Klinikleri 1(1):44-50.
Bray L, Callery P, Kirk S (2012) A qualitative study of the pre-operative operation o f children, young people and their parents’ for planned contience surgery: experiences and expectations. Journal of Clinical Nursing 2:1964-73.
Uzsen H, Yaz S. B, Gumus M (2021) The effect of ostomy on pediatric patient and family in nursing: A Systematic Review. Journal of Pediatric Surgical Nursing 10(4):153-58.
Bonita, A (2008) Colostomy for anorectal anomalies: high incidence of complications. Journal of Pediatric Surgery 36(5):795–98.
Yang Q. L, Wei Q, Huang Y, Jiang Y. X, Chen D. Z, HuangP, LiangL. J (2015) The application of multimedia messaging services via mobile phones to support outpatients: Home nursing guidance for pediatric intestinal colostomy complications. Chinese Nursing Research 2(1):9-11.
Li O. M, WuL. J, Huang Y. L, Zheng, M. H, Liu M. K (2019) Nursing care for infants after enterostomy: Experience with 483 cases over a 5-year period. Journal of Nursing Management 27(8):1614-19.
Ameh E. A, Mshelbwala P. M, Sabiu L, Chirdan L. B (2006) Colostomy in children-an evaluation of acceptance among mothers and caregivers in a developing country. South African Journal of Surgery 44(4):138-39.
Karadağ A, Korkut H (2010) Perstomal skin complications: Prevention, treatment and care [Peristomal cilt komplikasyonları: Önleme, tedavi ve bakım]. Turkish Journal Surgery/Ulusal Cerrahi Dergisi 26(3):175-79.
Menezes H. F, Góes F. G. B, de Araujo Maia S. M, Souza A. L. S (2013) Subjectivity in family care for the child with a stoma from the construction of his autonomy. Revista de Pesquisa: Cuidado é Fundamental Online 5(2):3731-39.
Melo M. C, Vilas-Boas B. N. F, MartinsB. L, Vasconcellos A. W. A, Kamada, I (2020) Stomized children care practices: Narratives of relatives. Revista Brasileira de Enfermagem 73(2): e20180370.
Ataseven, B (2012) The importance of data quality in qualitative scientific research. [Nitel bilimsel araştırmalarda veri kalitesinin önemi]. Marmara University Journal of Economic and Administrative Sciences/Marmara Üniversitesi İktisadi ve İdari Bilimler Dergisi 33(2): 543-64.
Malterud K (2012) Systematic text condensation: a strategy for qualitative analysis. Scandinavian Journal of Public Health 40(8):795-05.
Leite R. M, Oliveira E. K. F, Vasconcelos V. M, Silva D. M. A. D, Martins M. C (2016) Family care process with colostomy children in the home environment. Journal of Nursing UFPE;10(4):1223-30.
Goudarzi Z, Askari M, Asgari P, Mehran A (2016) The effects of an empowerment program on the stress among mothers of neonates undergoing colostomy. Crit Care Nurs J 9 (1):e 5098.
Abbasiasl H, Hakim A, Zarea K (2021) Explaining the care experiences of mothers of children with hirschsprung’s disease: A Qualitative Study. Global Pediatric Health 8: 1-8.
Dabirian A, Yaghmaei F, Rassouli M, Tafreshi ZM (2011) Quality of life ostomy patients: A qualitative study. Patient Preference and Adherence 5(1):1-5.
Perrson E, Gustaysson B, Hellstrom AL, Lappas G, Hulten L (2003) Ostomy patients’ perception of guality of care. Journal of Advanced Nursing 49(1):51-58.
Dabas H, Sharma K. K, Joshi P, Agarwala S (2016) Video teaching program on management of colostomy: Evaluation of its impact on caregivers. Journal of Indian Association of Pediatric Surgeons 21(2):54–56.
Dhanalakshmi, C (2016) Effectiveness of instructional package on knowledge regarding colostomy care among care givers in pediatric post operative ward at Institute of Child Health and Research Centre. Doctoral Dissertation, College of Nursing, Madurai Medical College, Madurai.
David J. G, Moreno S, Daniel R, Pall H (2020) The perceived ostomy educational needs of pediatric patients with inflammatory bowel disease and their caregivers. Journal of Pediatric Gastroenterology and Nutrition 70(6):849-52.
Mitchell AK, Rawl MS, Schmidt MC, Grant M (2007) Demographic clinical and quality of life variables related to embarrassment in yeterans living with an intestinal stoma. J Wound Ostomy Continence Nursing 34(5):524-32.
Brown H, Randle J. Living with a stoma: A review of literature. J Clin Nurse 2005;14 (1):74-81.
Vural F, Sütsünbüloğlu E, Şelimen D (2016) Literature Review: Profile of publications for the patients with stoma in Turkey [Literatür İnceleme: Stomalı bireylere yönelik yayınların Türkiye profili]. Turk J Colorecteral Dis 26 (1):59-70.
Ozgediz D, Poenaru D (2012) The burden of pediatric surgical conditions in low and middle income countries: a call to action. Journal of Pediatric Surgery 47(12):2305-311.

No competing interests reported.

Download PDF

Version 1

posted

You are reading this latest preprint version

Identifying the difficulties faced by parents of children with colostomy due to hirschsprung's disease: a phenomenological study

Status:

Version 1

Abstract

Figures

Introduction

Methods

Study design

Population and Sample

Instruments

Setting

Ethical considerations

Statistical analysis

Limitation

Results

Theme 1: First meeting

Theme 2: Difficulties

Theme 3: Coping

Discussion

First meeting

Emotional distress

Social isolation

Difficulties

Coping

Conclusion And Recommendations

References

Additional Declarations

Status:

Version 1