The evaluation of life quality of families of children after percutaneous endoscopic gastrostomy

Grzybowska-Chłebowczyk, Urszula; Więcek, Sabina; Popińska, Katarzyna; Szlagatys-Sidorkiewicz, Agnieszka; Toporowska-Kowalska, Ewa; Hapyn, Ewa; Wernicka, Anna; Sibilska, Marta; Gębora-Kowalska, Beata; Borkowska, Anna; Kierkuś, Jarosław

doi:10.1016/j.pepo.2014.12.005

Cited by 7 publications

(4 citation statements)

References 12 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Even if these complications are not life threatening, they are associated with increased healthcare utilization [22]. Our finding of no association between HEN-related QoL and the age of the children is in agreement with a previous pediatric study [21].…”

Section: Discussionsupporting

confidence: 92%

“…Caregivers (the child's mother in more than 90% of cases) reported significant improvements in social functioning, mental health, vitality, and in general health perception after starting enteral tube feeding. Similarly, Grzybowska-Chlebowczyk et al [21] reported that the placement of a PEG tube improved the lives of more than 70% of the caregivers of 302 children. Unfortunately, HEN-related QoL was not explored.…”

Section: Discussionmentioning

confidence: 96%

See 1 more Smart Citation

Health-Related Quality of Life and Home Enteral Nutrition in Children with Neurological Impairment: Report from a Multicenter Survey

et al. 2019

View full text Add to dashboard Cite

We aimed to measure the health-related quality of life (HRQoL) of children with neurological impairment (NI) on home enteral nutrition (HEN). An original survey among the caregivers of NI children on HEN for ≥ 12 months followed in three Italian centers (Messina, Como and Varese) was carried out between January 2013 and September 2018. The questionnaire was made up of 12 issues focused on the frequency with which certain situations associated with HEN are perceived, and grouped into physical and psychological/social dimensions. The results were analyzed statistically according to the age of the children, underlying disease, and the HEN programs’ duration. In total, 80 caregivers were approached, and 75 surveys were completed (an overall response rate of 93.7%). Nearly all the caregivers reported a satisfying HRQoL, ranging from acceptable (n = 6, 8%), to good (n = 22, 29.3%), to excellent (n = 47, 62.7%). A significant correlation was found between HRQoL and underlying NI-associated disease (p = 0.001). Our data showed that HEN positively affects the QoL of NI children and their caregivers. This should encourage healthcare providers to consider this nutritional intervention early in the approach to this group of patients, in order to prevent or reduce QoL impairment.

show abstract

Section: Discussionsupporting

confidence: 92%

Section: Discussionmentioning

confidence: 96%

Health-Related Quality of Life and Home Enteral Nutrition in Children with Neurological Impairment: Report from a Multicenter Survey

et al. 2019

View full text Add to dashboard Cite

show abstract

“…While many of the children in the current study presented with co‐morbid neurological conditions, influencing their ability to comment on pain or discomfort, it was noted that the caregivers' observations of their child's physical and emotional wellbeing influenced the decision‐making process. In line with findings from previous research (e.g., Grzybowska‐Chlebowczyk et al, 2015; Nelson et al, 2015) the results from the current study suggest that quality of life for both the child and the caregiver was improved post the insertion of a long‐term non‐oral feeding tube, resulting in increased family flexibility, opportunities for socialization and improved disposition on the part of the child.…”

Section: Discussionsupporting

confidence: 91%

“I was always struggling”: Caregivers' experiences of transitioning a child from oral to long‐term non‐oral feeding at an out‐patient hospital clinic in South Africa

Neille

Selikson

2021

Child

View full text Add to dashboard Cite

Background As the prevalence of paediatric dysphagia increases, the need for long‐term non‐oral feeding has also increased. Despite these developments, little is known about caregiver experiences of transitioning a child onto long‐term non‐oral feeds, and the factors which influence the process of decision‐making and the provision of consent to do so. This paper aims to explore these factors. Methods Semi‐structured interviews were conducted with nine participants recruited from the multidisciplinary out‐patient non‐oral feeding clinic at a hospital. Interviews explored caregiver experiences of decision‐making and the process of providing consent when transitioning their child to non‐oral feeds, as well as the support structures available to the caregivers. Interviews were audio recorded and transcribed, then analyzed using thematic analysis (Braun & Clarke, 2013) and content analysis (Neuendorf, 2016). Results Challenges to care and quality of life, access to information and culturally relevant counselling, and the involvement of family members and significant others emerged as prominent themes. Findings suggest that quality of life was the most common motivating factor for transitioning a child to non‐oral feeding methods. Several participants suggested that support and information sharing via digital platforms were both useful and effective. Implications The findings highlight caregivers' needs for improved access to information and social support. The findings hold implications for training of healthcare providers working in similar contexts and for models of service delivery which ensure that family‐centred intervention can be delivered in culturally and contextually relevant ways. With widespread access to smartphones, counselling should include digital messaging as a way of providing support and information sharing. Future research should focus on the complexities of counselling and the process of informed consent in settings impacted by diverse cultural, contextual and linguistic barriers, as well as the potential value of mobile health (mhealth) in ensuring improved health outcomes.

show abstract

“…It has been demonstrated that caregivers of children with NI have worse mental health, higher burnout levels and very poor HRQoL [45]. Enteral nutrition (including home enteral nutrition) showed to positively affect HRQoL of NI children and their caregivers, with significant improvements in physical, psychological and social functioning, mental health, vitality, and in general health perception [46][47][48].…”

Section: Tip 10: Know the Benefits Of Enteral Nutrition: Efficacy Samentioning

confidence: 99%

Top-ten tips for managing nutritional issues and gastrointestinal symptoms in children with neurological impairment

Dipasquale¹,

Gottrand²,

Sullivan³

et al. 2020

Ital J Pediatr

View full text Add to dashboard Cite

The prevalence of children with neurological impairment (NI) presenting feeding difficulties and gastrointestinal symptoms is rising. The most recent guidelines recommend early nutritional assessment and intervention in order to prevent undernutrition and growth failure, along with the proper diagnosis and treatment of some frequent gastrointestinal symptoms, such as gastroesophageal reflux disease (GERD) and constipation, which can further worsen the feeding process and nutritional status. Nonetheless, the nutritional issues and growth deficits of children with NI are often considered to be of low priority or under recognised by healthcare providers. The present article proposes ten top tips that highlight the major points along the nutritional management pathway of NI children. The implementation of these tips in all healthcare settings could potentially improve patient outcomes and reduce morbidity and mortality.

show abstract

The evaluation of life quality of families of children after percutaneous endoscopic gastrostomy

Cited by 7 publications

References 12 publications

Health-Related Quality of Life and Home Enteral Nutrition in Children with Neurological Impairment: Report from a Multicenter Survey

Health-Related Quality of Life and Home Enteral Nutrition in Children with Neurological Impairment: Report from a Multicenter Survey

“I was always struggling”: Caregivers' experiences of transitioning a child from oral to long‐term non‐oral feeding at an out‐patient hospital clinic in South Africa

Top-ten tips for managing nutritional issues and gastrointestinal symptoms in children with neurological impairment

Contact Info

Product

Resources

About