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Care Problems of Parents Who Have Children with Gastrostomy at Home
Gastrostomili Çocuğu Olan Ebeveynlerin Bakım Yükü Ve Etkileyen Faktörler
Remziye Semerci, Melahat Akgun Kostak, Ozlem Guray

 

How to cite / Atıf için: Semerci R, Akgun Kostak M, Guray O. Care Problems of Parents Who Have Children with Gastrostomy at Home. Euras J Fam Med 2018;7(2):61-67

 

Original Research / Orijinal Araştırma


ABSTRACT

Aim: This study was planned to determine the care burden of parents who had child with gastrostomy and affecting factors.

Methods:This descriptive and cross sectional study was conducted between April 15thand July 15th,2017 with 34 parents in pediatric surgery unitat Trakya University Hospital. Data was collected by ‘Survey Form’and ‘Burden Interview’. 

Results:The mean age of the children was 9.91±5.26, durationof gastrostomy was 4.65±2.64 years. All of participants were mothers. Mothers’ ‘Burden Interview’ total scores was 35.20±10.54. Burden of mothers were; 11.8% ‘Less’, 52.9% ‘Medium’, 32.4% ‘High’ and 2.9% ‘Extreme’. Most of the mothers (94.1%) were taken informationabout gastrostomy care. Most of the mothers (82.4%) experienced problems related to gastrostomy care and mothers who experienced problems had more care burden (p=0.033). Mothers who experienced problem related leaking at tube site and who do not know what to do if a problem takes place about gastrostomy had more care burden (p<0.05). 

Conclusion: The care burden of the mothers were medium and high level. Care Burden of mothers was affected type of problems that mothers experienced at home, status of intervention yourself to problems. We recommended that education should be planned according to the care burden of parents and the affecting factors must be taken into account in this program, and parents should be visited regularly.

Keywords: burden of illness, gastrostomy, children, nursing

ÖZET

Amaç; Bu çalışma gastrostomili çocuğu olan ebeveynlerin bakımı yükünü ve bunu etkileyen faktörleri belirlemek amacıyla planlandı.

Yöntem: Tanımlayıcı ve kesitsel nitelikteki çalışma 15 Nisan 2017-15 Temmuz 2017 tarihleri arasında Trakya Üniversitesi Hastanesi, çocuk cerrahi ünitesinde gastrostomi tanısı ile izlenen 34 çocuğun ebeveyni ile yürütüldü. Veriler ‘Anket Formu’ ve ‘Bakım Verme Yükü Ölçeği’ ile toplandı. 

Bulgular: Çocukların yaşı 9,91±5,26, gastrostomili olma süresi 4,65±2,64 yıldı. Katılımcıların hepsi anneydi. Ebeveynlerin ‘Bakım Verme Yükü Ölçeği’ total puanı 35,21±10,55 idi. Annelerin bakım yükü %11,8’inin ‘Az/Hiç’, %52,9’unun ‘Orta’, %32,4’ünün ‘İleri’, %2,9’unun ‘Aşırı’ düzeyde olduğu bulundu. Ebeveynlerin %94,1’i gastrostomi bakımı ile ilgili bilgi almıştı. Ebeveynlerin %82,4’ü gastrostomi bakımı ile ilgili sorun yaşamıştı ve sorun yaşayan ebeveynlerin bakım verme yükleri daha fazla idi (p=0,033). Gastrostomi tüpünün kenarında sızıntı problemi ile karşılaşan, gastrostomi ile ilgili sorunlar ile karşılaştığında ne yapacağını bilemeyen ebeveynlerin bakım verme yükleri daha fazla idi (p<0,05). 

Sonuç: Bu çalışmada gastrostomili çocuğu olan ebeveynlerin bakım yükleri orta ve ileri düzeyde idi. Ebeveynlerin bakım yükünü; evde karşılaştıkları sorunların tipi, sorunlara müdahale etme durumları etkiledi. Gastrostomili çocuğun evde bakımı ile ilgili planlanacak eğitim programında ebeveynlerin bakım yükleri ve bunları etkileyen faktörlerin dikkate alınması ve düzenli ev ziyaretlerinin yapılması bakım yüklerinin azaltılmasında önerilebilir.

Anahtar kelimeler: hastalık yükü, gastrostomi, çocuklar, hemşirelik


Introduction

Children’s care who are fed with gastrostomy carried out by their parents at home via technological advances in the field of medicine (1). Therefore, parents play an important role in the care of the child who is fed with gastrostomy (2). Feeding the child with gastrostomy is a very stringent, exhausting and tiring situation for parents (3,4). In the literature it was stated that leakage, clogging or displacement of the tube, disease or worsening of gastroesophageal reflu, infection are complications of gastrostomy (5). The difficulties which experienced during the feeding of child at home are important problems for families and these problems negatively affect the life quality of the children and their families (1,3,6,7).

The American Society of Parenteral and Enteral Nutrition (ASPEN) state that patients and their relatives with chronic illness and nutritional problems should be supported by education and ASPEN also emphasize that families should be safely maintain nutrition at home. It is recommended that patients and their relatives should be monitored periodically at home, to early identify and resolve of physical and psychological problems are important for supporting patients and their relatives to increase the quality of life and to decrease the care burden (1).

Determination of problems is necessary for planning and implementing health care(8,9). During hospitalization and at home, it is essential for children and their families to be supported by nurses about gastrostomy care (1,5,10). For this reason, this study was planned to determine the care problems of parents who have child with gastrostomy at home, the care burden of parents, and the factors that affect them.

Methods

The participants were selected from Trakya University Hospital, Pediatric Surgery Unit in the city of Edirne at Turkey. The study was conducted with 34 mothers who have child with gastrostomy, and who were volunteer to participate in the study. 

This research was conducted as a descriptive study.Data was collected between 2017 April 15thand 2017 July 15thvia ‘Survey Form’and ‘Burden Interview Scale’. ‘Survey Form’ which was prepared by the researchers after the literature review, consisted of twenty-seven questions concerning the socio demographic characteristics of children, their parents and related care problems. ‘Burden Interview Scale’ was evaluated for validity and reliability by Inci and Erdem (11) and was developed for determining care burden of parents. It consists of 22 questions and five likert-type. (0=never, 4=always). Minimum score is ‘0’point and maximum score is ‘88’ point; ‘0-20’ point is less burden, ‘21-40’ point is medium burden, ‘41-60’ point is high burden, ‘61-88’ point is extreme burden.

Data for the study was collected with face to face method. Before the collection, the volunteer mothers have informed about study. Filling the forms took average of 10-15 minutes.

The data was evaluated with SPSS 19.0 package program. The data for the socio demographic characteristics of participants analyzed by number, percentage and mean ± standard deviation. The relationships between participants’ gastrostomy care characteristics and ‘Burden Interview’ scorewere evaluated by Mann Whitney U test. p

For the study, a permission dated 12.04.2017 and numbered 07/11 was obtained from the Trakya University of School Medicine Scientific Ethical Board, and written permission was obtained from the Trakya University Hospital, Chief of Pediatric Surgery Unit. Before the study, mothers were informed about the aim and context of the study. They were informed about their identity information would be kept secret and they could leave the study whenever they wanted.

Results

The mean age of the children was 9.91±5.26, mean age of mothers was 35.97±6.27, mean age of the fathers was 40.15±6.26, time of gastrostomy was 4.65±2.64 years. All of the participants were mothers and 58.8% of children were male, 61.8% of mothers and fathers graduated from primary school, 76.5% had nuclear family structure (Table 1).

Table 1. Characteristics of parents and children (n=34)

Fifty percentage of mothers were supported by grandmothers-grandfathers for children care, 94.1% of mothers had taken information about gastrostomy care. 76.5% of mothers took information from clinic nurses, 79.4% from clinic doctors. Most of the mothers (82.4%) stated that their information was enough for gastrostomy care.  Most of the mothers (82.4%) lived problems related gastrostomy care at home (Table 2).

Table 2. Gastrostomy care characteristics of mothers (n=34)

Mothers’ average total score of Burden Interview Scale (BI) was 35.20±10.54 (min:18, max:55), 11.8% of mothers (n=4) had less burden, 52.9% of them (n=18) had medium burden, 32.4% of them (n=11) had high burden and 2.9% of them (n=1) had extreme burden.

According to the mothers’ statement, 50% of them experienced leaking at tube site, 50% of them experienced removing the tube from its place and 26.5% of them experienced infection. It was found that mothers who experienced leaking at tube site had high BI score (p=0.023) (Table 3).

Table 3. The problems of mothers related to gastrostomy according to Burden Interview scores (n=34) 

According to the mother’s statements; 55.9% of them inadequate feeding with gastrostomy, 50.0% of them inadequate dressing, 38.2% of them inadequate supplying formula/material related to gastrostomy. It was found that mothers who did not know what to do when they had problems had high ‘Burden Interview’ scores (p=0.028) (Table 4).

Table 4. Situations that parents are inadequate to feed with gastrostomy according to Burden Interview scores (n=34) 

Discussion

This study was conducted to determine the care problems of parents who had child with gastrostomy at home, the parents burden of care, and the factors that affect them. Fifty percentage of mothers stated that they were supported by grandmothers-fathers for children care. Feeding with gastrostomy is difficult and tiring for caregivers. Because of this, parents or caregivers should be supported. Brotherton et al. stated that 42% of the parents need to support for gastrostomy care/feeding (12). Stavroulakis et al. indicated that parents who took education about feeding with gastrostomy and care, cope easily with problems at home (13). Ayar et al. evaluated the home health care services in Turkey for pediatric patients and they found that 84% of the health care professionals visit home for gastrostomy care (14).It is important to determine the problems of parents and their needs to support them for gastrostomy care.

Most of mothers have taken information about gastrostomy care and more of them took this information from clinic nurses and clinic doctors. In this study more of mothers stated that this information was enough for them. Esenay I et al. found that 90% of the mothers took education about gastrostomy care, 75% of them took this education from clinic nurses (6). Downs et al. stated that, for parents who took education about gastrostomy care, burden and stress were reduced about gastrostomy care (15). Rodrigues et al. stated that nurses should educate parents about gastrostomy care according to the guidelines (5). Alahan et al. stated that caregiver who didn’t have information about gastrostomy care had high care burden (16). It is important that parents should be informed about gastrostomy care before hospital discharge and after the discharge. Health professionals should visit them at their house to check parents information and ability about gastrostomy.

Mothers had medium and high care burden in this study. Pedrón-Giner et al. stated that mothers who had child with gastrostomy had high care burden and had high risk of presenting symptoms of anxiety–depression (17). Pemberton et al. stated that parents should be supported about gastrostomy care and parents should be informed about gastrostomy care for reducing care burden and stress (18). We know that gastrostomy care is so difficult for parents. If the parents do not support each other, the responsibility of the primary caregiver can increase. As expected, mothers are usually primary caregivers, and their burden is higher than other family members.

In the present study, it was found that most of mothers had experienced gastrostomy related problems at home. These problems are bleeding at tube site, stomach ulcer at the tube site, leaking at tube site, infection and obstruction, nutrition intolerance and removing the tube from its place. It was found that mothers who experienced leaking at tube site had high care burden. In the literature leakage is a common problem in gastrostomy care (18,19). Leakage is often associated with long-term use of gastrostomy (20,21). When the leakage occurs, infection, gastric hypersecretion, motility deacrease, poor activities that increase the intra-abdominal pressure could take place (20). These complications cause anxiety for parents and parents’ care burden may increase after these.

It was found that mothers who did not know what to do when they had problems had high care burden. Mela et al. stated that some parents, despite taking a lot information about gastrostomy, couldn’t deal with problems related to gastrostomy (2).Sullivan stated that parents need more specific information about feeding with gastrostomy to taking a decision and solve problems when they met challenges related gastrostomy (22). In accordance with these findings, it can be said that nurses and other health professionals should assess the parents’ knowledge and attitudes about gastrostomy care. 

Limitation of this study is being carried out with only one university hospital in Turkey. Therefore, these findings may not be generalized to all of parents in Turkey or other countries. We recommend future studies to examine factors that influence attitude of parents towards gastrostomy care with larger randomized sample size and conduct investigations into care burden of parents.

Conclusion

It was determined that the care burden of mothers was medium and high in this study. Mothers’ Burden Interview scores was affected by type of problems. Mothers who experienced problems related leaking at the tube site, and parents who did not know what to do when they had problems had high care burden. 

We recommended that education should be planned according to the care burden of parents and affecting factors. Nurses should inform parents according to their needs and provide professional support to parents.

Acknowledgments

The authors have no funding or conflicts of interest and gratefully acknowledge the kind cooperation of all the mothers who generously gave of their time and shared their experiences, as well as health care professionals for their help and support during the data collection process. 

References

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