Feeling of Burden, Psychological Distress, and Anxiety among Primary Caregivers of Children with Home Enteral Nutrition

Calderón, Caterina; Gómez-López, L.; Martínez‐Costa, Cecilia; Borraz, Soraya; Moreno-Villares, José Manuel; Pedrón‐Giner, Consuelo

doi:10.1093/jpepsy/jsq069

Cited by 56 publications

(52 citation statements)

References 39 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…Themes related to the child, the parent, and the family unit have been noted in other studies on this topic. 20 Similarly, studies have acknowledged the balance between positive and negative outcomes related to G-tube feeding 21 and the presence of both medical and psychosocial challenges. 22,23 The study's thematic framework, particularly the child-focused aspect, is similar to the World Health Organization's International Classification of Functioning, Health and Disability.…”

Section: Figurementioning

confidence: 99%

Family Experiences With Feeding Tubes in Neurologic Impairment: A Systematic Review

et al. 2015

View full text Add to dashboard Cite

BACKGROUND AND OBJECTIVE: Gastrostomy tubes (G-tubes) are frequently used to provide enteral nutrition for children who have neurologic impairment. Understanding the impact of G-tubes from the family’s perspective will inform decision-making and improve support from health care providers. This study explored the experiences of families after G-tube placement in children with neurologic impairment. METHODS: We conducted a systematic review of English-language qualitative primary research studies describing family experiences after G-tube placement. Six electronic databases were searched from inception to June 2014. Two authors independently screened and identified relevant studies, evaluated quality of reporting by using the Consolidated Criteria for Reporting Qualitative Research tool, and extracted data. Overarching concepts were developed by using thematic analysis. RESULTS: From 2674 screened abstracts, 84 texts were reviewed, and 13 studies met the inclusion criteria. G-tubes affect the lives of children, parents, and the family unit in many ways, both positive and negative. Improvements and challenges were described for children’s health and happiness, for parental caregiving and stress, and for logistics and bonding within the family. G-tube feeding also changed relationships within the family, between the family and the medical system, and between the family and the outside world. Furthermore, experiences varied, with different families framing similar concepts as positive and negative. CONCLUSIONS: G-tube placement has diverse effects on daily life for children with neurologic impairment and their families. Clinicians may use the themes identified in this study to guide conversations with families about their values, experiences, and expectations before and after G-tube placement.

show abstract

Section: Figurementioning

confidence: 99%

Family Experiences With Feeding Tubes in Neurologic Impairment: A Systematic Review

et al. 2015

View full text Add to dashboard Cite

show abstract

“…However, elevated stress and anxiety have been positively associated with higher levels of caregiver burden in parental caregivers of children requiring home enteral nutrition (Calderon et al, 2010). Similarly, in parental caregivers of young children with cancer, decreased caregiver strain was found to be related to increased health-related QOL (Klassen et al, 2011).…”

Section: Review Of the Literaturementioning

confidence: 99%

Sleep Quality, Stress, Caregiver Burden, and Quality Of Life in Maternal Caregivers of Young Children With Bronchopulmonary Dysplasia

Feeley¹,

Turner-Henson²,

Christian³

et al. 2014

Journal of Pediatric Nursing

View full text Add to dashboard Cite

Little is known about the influence of sleep quality, stress, and caregiver burden on quality of life in maternal caregivers of young children with bronchopulmonary dysplasia (BPD). In 61 maternal caregivers (mean age 29.59 years) of young children with BPD (mean age 13.93 months), caregivers reported sleeping a mean of 5.8 hours, and significant correlations were found between sleep quality and depressive symptoms and stress, as well as an inverse correlation with quality of life. Sleep quality was found to be the most significant predictor of quality of life in maternal caregivers.

show abstract

“…It was originally developed to assess the caregivers of dependent older adults, but recent studies have used the questionnaire in children and verified good responsiveness and usability 23,24 . The assessment consists of 4 factors: the impact of caregiving, interpersonal relations, caregiving expectancies and self-efficacy perception.…”

Section: Burden Of Caregiversmentioning

confidence: 99%

Is functional dependence of Duchenne muscular dystrophy patients determinant of the quality of life and burden of their caregivers?

Moura

Wutski

Voos

et al. 2015

Neuromuscular Disorders

View full text Add to dashboard Cite

Objective:The relationship between functional dependence and quality of life (QOL) in Duchenne muscular dystrophy (DMD) patients and burden and QOL in caregivers is not clear. This study investigated possible relationships between functional dependence/QOL of DMD patients and QOL/burden of caregivers. Method: This study included 35 boys (6-17 years) and respective caregivers (above 21 years). Caregivers answered to World Health Organization Quality of Life and Zarit Burden Interview questionnaires. Patients were assessed with the Motor Function Measure and the Autoquestionnaire Qualité de vie Enfant Imagé. Spearman correlations and linear regressions were run to investigate relationships between the variables. Results: The occurrence of lower QOL and higher burden among the caregivers of patients with Duchenne muscular dystrophy was evidenced. The functional dependence of patients was not considered a determinant factor. Higher caregivers' burden was related to lower caregivers' QOL and to higher patients' ages.Keywords: Duchenne muscular dystrophy, behavior, quality of life, motor activity. RESUMOObjetivo: A relação entre qualidade de vida e função motora de pacientes com distrofia muscular de Duchenne (DMD) e sobrecarga e qualidade de vida (QV) dos cuidadores não está clara na literatura. Esse estudo investigou possíveis relações entre dependência funcional/ QV de pacientes e sobrecarga/QV dos cuidadores em 35 meninos (6-17 anos) com DMD e respectivos cuidadores (acima de 21 anos). Método: Cada cuidador respondeu ao questionário de QV da Organização Mundial de Saúde e de sobrecarga de Zarit e o paciente foi avaliado com a medida de função motora e o Autoquestionnaire Qualité de vie Enfant Imagé. Correlações de Spearman e regressões lineares investigaram possíveis relações entre as variáveis. Resultados: A ocorrência de menor QV e maior sobrecarga entre cuidadores foi evidenciada, enquanto a dependência funcional dos pacientes não foi considerada fator

show abstract

Feeling of Burden, Psychological Distress, and Anxiety among Primary Caregivers of Children with Home Enteral Nutrition

Abstract: Psychological distress and anxiety show a positive correlation with caregivers' feeling of burden, and may disrupt family well-being. Early identification of high-risk situations is essential in order to plan specific psychosocial aid efficiently.

Cited by 56 publications

References 39 publications

Family Experiences With Feeding Tubes in Neurologic Impairment: A Systematic Review

Family Experiences With Feeding Tubes in Neurologic Impairment: A Systematic Review

Sleep Quality, Stress, Caregiver Burden, and Quality Of Life in Maternal Caregivers of Young Children With Bronchopulmonary Dysplasia

Is functional dependence of Duchenne muscular dystrophy patients determinant of the quality of life and burden of their caregivers?

Contact Info

Product

Resources

About