Dysphagia and feeding difficulties post-pediatric ingestion injury: Perspectives of the primary caregiver

Follent, Anna M.; Rumbach, Anna F.; Ward, Elizabeth C.; Marshall, Jeanne; Dodrill, Pamela; Lewindon, Peter

doi:10.1016/j.ijporl.2017.09.013

Cited by 10 publications

(8 citation statements)

References 53 publications

(69 reference statements)

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“…In short, family-centered care models are needed to support the family unit in caring for a child with dysphagia and/or with eating difficulties. The parents and the informal caregivers must be included in the process and receive monitoring of their physical and mental well-being [12][13] .…”

Section: Introductionmentioning

confidence: 99%

Stress, Overload and Quality of Life in Caregivers of Children With/Without Orofacial Cleft and Dysphagia

Bom

Prado

Farinha

et al. 2021

Texto contexto - enferm.

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Objective: to analyze the correlation between stress, overload and quality of life of informal caregivers of children with and without orofacial cleft and dysphagia. Method: a cross-sectional, case-control study carried out in a public and tertiary hospital, located in the inland of São Paulo, Brazil, which encompassed two groups: case and comparative. The case group consisted of 30 informal caregivers of children with orofacial cleft and dysphagia, using a feeding tube, while the comparative group consisted of 30 informal caregivers of children without orofacial cleft, fed orally. For data collection, the Bourden Interview Scale, Inventory of Stress Symptoms for Adults and the World Health Organization Quality of Life Bref were used. For statistical analysis, the following tests were used: chi-square, Student's t, Mann-Whitney and Pearson's correlation, all with a 5% significance level. Analysis of the linear correlation forces was also used. Results: in the case group, stress presented a moderate correlation with the overall quality of life (r=-0.41; p=0.025) and satisfaction with health (r=-0.42; p=0.021). Also in the case group, referring to quality of life, the Physical and Psychological domains presented a strong correlation with overload (r=-0.54, p=0.002; r=-0.55, p=0.002, respectively). In the comparative group, no correlations were identified. Conclusion: among the informal caregivers of children with orofacial cleft and dysphagia, there was a correlation between stress and the perception of global quality of life and satisfaction with health, as well as between overload and quality of life, in the physical and psychological dimensions.

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Section: Introductionmentioning

confidence: 99%

Stress, Overload and Quality of Life in Caregivers of Children With/Without Orofacial Cleft and Dysphagia

Bom

Prado

Farinha

et al. 2021

Texto contexto - enferm.

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“…Moreover, the creation of family-oriented care models is essential to support them in their activities and monitor those involved in all health spheres: physical, mental, and spiritual. [28][29][30] In short, to invest in the caregiver's health is to promote the rehabilitation process since, besides being responsible for the child's care, they have needs and roles that go beyond the act of caring.…”

Section: Sleepmentioning

confidence: 99%

Correlation between burden and sleep quality in informal caregivers of infants with orofacial cleft

Batista

Martinez

Bom

et al. 2023

Rev. paul. pediatr.

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Objective: To evaluate the correlation between burden and sleep quality in caregivers of infants with cleft lip and/or palate. Methods: This descriptive cross-sectional study was carried out in a Brazilian tertiary public hospital between March and September 2020. The sample included the main informal, literate caregivers of infants with cleft lip and/or palate, aged 18 years or older. The instruments used were the Burden Interview Scale and the Pittsburgh Sleep Quality Index. Data were collected during the infants’ hospitalization. Statistical analysis adopted Pearson and Spearman correlations, with a 5% significance level. Results: A total of 31 informal caregivers participated in the study, most of them mothers (n=28; 90%), with a mean age of 30 years (standard deviation – SD=7.5), low socioeconomic status (n=20; 64%), who completed high school (n=19; 61%), were married (58%), had two children (n=15; 48%), and no employment relationship (n=18; 58%). A moderate correlation was found between sleep quality and burden (r=0.39; p=0.032) and between burden and subjective sleep quality (r=0.39; p=0.029), sleep latency (r=0.43; p=0.017), and daytime dysfunction (r=0.49; p<0.001). Conclusions: The study showed that the higher the burden, the lower the sleep quality. The findings indicate the need to plan and implement interventions to minimize the burden experienced by these informal caregivers in order to improve their sleep quality.

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“…This is due to myriad reasons, including poor clinician recognition of carer concerns. 24 For instance, researchers have noted that ‘Most of the primary caregivers… found it difficult to coordinate care and obtain support when needed’, 25 ,p.25 and ‘parents could benefit not only from sensitive and respectful collaboration but also from anticipatory guidance’. 26 ,p.212…”

Section: Introductionmentioning

confidence: 99%

‘it was that … specialist … that finally listened to us … that's probably a weird answer to what you were expecting’: Clinician and carer perspectives on brilliant feeding care

Kaplun

Hopwood

et al. 2022

Health Expectations

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Introduction To extend research on positive aspects of health care, this article focusses on health care for children who tube‐feed—this is because knowledge about tube‐feeding for children is limited and fragmented. This is achieved by consulting with clinicians and carers who supported children who tube‐feed to clarify their understandings of and experiences with brilliant feeding care. Methods Nine clinicians and nine carers who supported children who tube‐fed were interviewed. The interview transcripts were analysed thematically. Results Findings highlighted several features of brilliant feeding care—namely: practices that go above and beyond; attentiveness; empowerment; being ‘on the same page’; hopefulness and normalcy. Conclusions These findings show that seemingly trivial or small acts of care can make a significant meaningful difference to carers of children who tube‐feed. Such accounts elucidate brilliant care as grounded in feasible, everyday actions, within clinicians' reach. The implications associated with these findings are threefold. First, the findings highlight the need for clinicians to listen, be attuned and committed to the well‐being of children who tube‐feed and their carers, share decision‐making, source resources, and instil hope. Second, the findings suggest that carers should seek out and acknowledge clinicians who listen, involve them in decision‐making processes, and continue to source the resources required to optimize child and carer well‐being. Third, the findings point to the need for research to clarify the models of care that foster brilliant feeding care, and the conditions required to introduce and sustain these models. Patient or Public Contribution All of the carers and clinicians who contributed to this study were invited to participate in a workshop to discuss, critique, and sense‐check the findings. Three carers and one clinician accepted this invitation. Collectively, they indicated that the findings resonated with them, and they agreed with the themes, which they indicated were well‐substantiated by the data.

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Dysphagia and feeding difficulties post-pediatric ingestion injury: Perspectives of the primary caregiver

Cited by 10 publications

References 53 publications

Stress, Overload and Quality of Life in Caregivers of Children With/Without Orofacial Cleft and Dysphagia

Stress, Overload and Quality of Life in Caregivers of Children With/Without Orofacial Cleft and Dysphagia

Correlation between burden and sleep quality in informal caregivers of infants with orofacial cleft

‘it was that … specialist … that finally listened to us … that's probably a weird answer to what you were expecting’: Clinician and carer perspectives on brilliant feeding care

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