Perspectives of Parents/Guardians of Children with Feeding/Swallowing Problems

Stoner, Julia B.; Bailey, Rita L.; Angell, Maureen E.; Robbins, Julie; Polewski, Korrin

doi:10.1007/s10882-006-9020-x

Cited by 17 publications

(9 citation statements)

References 15 publications

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“…Participants acknowledged the need for multidisciplinary working to ensure holistic management of their child's difficulties, as reported elsewhere within the literature. 23–27 35 Parents encountered a number of barriers to accessing appropriate services in the early stages of their child's life and described a range of negative physical and emotional effects on themselves and their children. While resources may be limited, improved staffing and time for direct family support may have reduced the impact of these barriers.…”

Section: Discussionmentioning

confidence: 99%

“… 19–21 Recommendations for practice include the need for good-quality information and support for families and the need for professionals to understand caregiver's perspectives and priorities and to adopt a model of partnership working with the families under their care. 19–21 23 Studies looking at specialist feeding clinics within the USA and the UK 24–27 describe the intricate and multifaceted nature of feeding and swallowing disorders and highlight the importance of multidisciplinary working to ensure holistic, child-centred and family-centred assessment, treatment and support. This paper seeks to build on this research and explore the issues pertinent to families caring for children with dysphagia in the UK, and to gain their perspectives on the care they have received.…”

Section: Introductionmentioning

confidence: 99%

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What do parents of children with dysphagia think about their MDT? A qualitative study

2014

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ObjectivesTo seek the experiences and perspectives of parents caring for children with dysphagia, with emphasis on their experiences of working within their child's multidisciplinary team (MDT).SettingThis research was completed in community settings, within families’ homes across the UK.Participants14 families self-selected to participate in the study. Criteria specified that participants must care for a child under the age of 18 and to decrease ambiguity the term ‘diagnosis of dysphagia’ was defined as the need for modified (thickened) fluids. Exclusion criteria: caring for an adult over the age of 18; diet and fluid modifications for reasons other than dysphagia (eg, for symptomatic treatment of gastro-oesophageal reflux disease. Participants were interviewed within their homes using a semistructured questionnaire and data was analysed using a descriptive phenomenological approach through use of thematic coding and constant comparison. Themes and relationships were inductively generated from the data.ResultsParticipants universally expressed a desire to be involved with their child's MDT; this study identified the following facilitators and barriers to collaboration: accessing services, professional knowledge and professional skillset. Participants described three means of responding to these barriers: reacting emotionally, seeking solutions and making decisions.ConclusionsThis study recorded in-depth reports of participants’ experiences of working with healthcare providers. Despite government-driven efforts towards person-centred healthcare and social care, participants shared accounts of times when this has not occurred, describing a negative impact on the well-being and quality of life of their child and family.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

What do parents of children with dysphagia think about their MDT? A qualitative study

2014

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“…he eating behaviors children express reflect codependent interactions among intrinsic properties of the child, the environment, and dimensions of the task itself (Thelen & Smith, 1994). Problematic eating behaviors, such as refusal of specific or all foods, gagging during mealtime or in anticipation of eating, avoidance of specific food textures, or insistence on food being offered in a certain way, pose significant challenges for children, families, and health care providers (Arvedson, 2008;Linscheid, 2006;Stoner, Bailey, Angell, Robbins, & Polewski, 2006). As problematic behaviors repeat over time, they can become entrenched and difficult to change, and nutrition and growth often suffer (Williams, Riegel, & Kerwin, 2009).…”

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confidence: 99%

Development and Content Validation of the Pediatric Eating Assessment Tool (Pedi-EAT)

Thoyre

Pados

Park

et al. 2014

Am J Speech Lang Pathol

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“…Among them seven patients with CP improved their position significantly. Sometimes a simple posture or use of special adaptive simple feeding equipment may dramatically improve the child's intake 24,25 . Through the training the children gained a set of new skills of positioning during feeding that improved feeding of the children with CP.…”

Section: Discussionmentioning

confidence: 99%

Outcomes of Feeding Training to Mothers Having Child with Cerebral Palsy Admitted at A Tertiary Level Hospital in Bangladesh

Das

Zaman

Hasan

et al. 2017

Chatt Maa Shi Hosp Med Coll J

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Background: The majority of children with Cerebral Palsy have feeding difficulties. It has a great impact on growth and development in children with cerebral palsy. Feeding difficulties may leads to chronic respiratory disease, malnutrition and reduce quality of life of both children and caregiver. Feeding difficulties cause stressful meal time for caregivers and fear of food for children. In well resource country many hi-tech equipments for the management of feeding difficulties are available but which is not available in low resource country like Bangladesh. Though some of low tech approaches have started a little but the effectiveness or outcomes of these technologies are not evaluated. This study is aimed to evaluate the effect of feeding training on feeding difficulties in children with cerebral palsy. Methods: This is a quasi experimental study. Twenty children with cerebral palsy aged 2 -9 years having feeding difficulties enrolled as study subjects. Initially degree of feeding difficulties were assessed by evaluating body posture and frequency of aspiration during feeding which is scored according to the response of the child. After giving feeding training to the mother feeding difficulties were reevaluated. Mean score of feeding difficulties before and after intervention were compared by paired 't' test. Results were analyzed by SPSS. Results: Among the study subject 14(70%) were male and 6(30%) were female. Most of them were found to have hemiplegic CP 7(35%). The mean score in terms of positioning and frequency of aspiration were significantly changed after intervention (14.15 vs. 15.85 p = <0.0005), (11.6 vs 15.5 p = < 0.0005). Conclusion: Low-tech strategies and therapies are helpful for the management of feeding difficulties in children with cerebral palsy. Foods and drinks modifications should need to get extra attention for the nutritional improvements of those children. Government and international and national health NGOs should studied more about these low tech strategies to improve the condition of the children with cerebral palsy and to reduce the stress and sufferings of the parents.

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Perspectives of Parents/Guardians of Children with Feeding/Swallowing Problems

Cited by 17 publications

References 15 publications

What do parents of children with dysphagia think about their MDT? A qualitative study

What do parents of children with dysphagia think about their MDT? A qualitative study

Development and Content Validation of the Pediatric Eating Assessment Tool (Pedi-EAT)

Outcomes of Feeding Training to Mothers Having Child with Cerebral Palsy Admitted at A Tertiary Level Hospital in Bangladesh

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