Parent/Caregiver Stress During Pediatric Hospitalization for Chronic Feeding Problems

Garro, Adrienne; Thurman, S. Kenneth; Kerwin, Mary Louise E.; DuCette, Joseph

doi:10.1016/j.pedn.2005.02.015

Cited by 71 publications

(43 citation statements)

References 25 publications

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“…It has been found that parents experience less stress during a child's hospitalisation when they gain control over the situation through the gathering of information about their child's medical difficulties and treatment options [2,45]. These findings are relevant to the current study because the mothers also demonstrated an increased perception of control of their situation through gathering of information.…”

Section: Self-empowered: Becoming the Enablermentioning

confidence: 58%

“…Many of these difficulties may be resolved with medical treatment, except in about 3% of cases which will be chronic in nature and require intensive intervention and hospitalisation [2]. Chronic feeding and/ or swallowing difficulties make it a challenge or impossible for children to obtain adequate nutrition through oral intake alone necessitating enteral feeding [3].…”

mentioning

confidence: 99%

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The Lived Experience of Mothers of Children with Chronic Feeding and/or Swallowing Difficulties

Hewetson

Singh

2009

Dysphagia

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The purpose of this phenomenologic study was to describe the lived experiences of seven mothers who were providing home-based care for their children with feeding and/or swallowing difficulties. Data were collected using semistructured interviews and were analysed as per Colaizzi's method of inductive reduction. Results suggest that the mothers' experiences can be understood as two continuing journeys that were not mutually exclusive. The first, "Deconstruction: A journey of loss and disempowerment," comprised three essences: (1) losing the mother dream, (2) everything changes: living life on the margins, and (3) disempowered: from mother to onlooker. The second journey was "Reconstruction: Getting through the brokenness" with the essences of (4) letting go of the dream and valuing the real, (5) self-empowered: becoming the enabler, (6) facilitating the journey, and (7) the continuing journey: negotiating balance. The phenomenon of being the mother of a child with chronic feeding and/or swallowing difficulties continued to be a transformative experience in which personal growth emerged along with chronic sorrow and periodic resurgence of struggle and loss. Implications call for healthcare professionals to incorporate maternal meanings and needs in providing appropriate family-focused intervention.

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Section: Self-empowered: Becoming the Enablermentioning

confidence: 58%

mentioning

confidence: 99%

The Lived Experience of Mothers of Children with Chronic Feeding and/or Swallowing Difficulties

Hewetson

Singh

2009

Dysphagia

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“…It is interesting to note that the hypothesis that "big ticket" care is likely more memorable and consequently more likely to be accurately recorded was not supported in the case of hospitalizations for child household members. This finding was surprising given that the hospitalization of a child is considered a significant life event [33][34][35].…”

Section: Discussionmentioning

confidence: 99%

Agreement between Internet-Based Self- and Proxy-Reported Health Care Resource Utilization and Administrative Health Care Claims

et al. 2012

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“…Feeding disorders are common and of significant concern to any family who presents with this type of problem. 25,26 For families of a child with a transplant, the burden of a comorbid feeding disorder is potentially devastating and increases the overall burden of providing care within the home environment. Yet, little is known about the relationship of transplant and feeding disorder of childhood.…”

Section: Discussionmentioning

confidence: 99%

A clinical description of children with solid organ transplants who present with feeding disorder

Lerret

Erato

Goday

et al. 2019

Pediatric Transplantation

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Pediatric solid organ transplant recipients have long‐standing malnutrition concerns related to their pretransplant medical status. The targeted nutrition therapy utilized pre‐, peri‐, and post‐transplantation may have the adverse effect of impeding normally developing feeding skills, particularly in very young children. Little is known about the relationship between transplantation and feeding disorders of childhood. The purpose of this study was to describe severity of feeding disorder and parental stress in patients with transplant compared to children followed in a specialty feeding clinic and the general community. Sixty‐four children, comprised of 32 children with solid organ transplant ages 2 months to 12 years and 32 matched control patients diagnosed with a feeding disorder without history of solid organ transplant, were reviewed. All children were from the Feeding, Swallowing, and Nutrition Clinic at a single children's hospital. Findings indicate that patients who received a transplant and presented with a feeding problem had worse symptoms of feeding disorder than are typically found in the general community. These feeding problems disrupt mealtime behavior, caregiver and child relationship within a mealtime context, and may result in maladaptive feeding strategies used by families. When transplanted children present with feeding disorders, they are severe and have multiple effects on both the child and the feeding dynamic between the child and the child's caregivers. Further investigation may help us to better understand the relationship between transplantation and symptoms of feeding disorder.

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Parent/Caregiver Stress During Pediatric Hospitalization for Chronic Feeding Problems

Cited by 71 publications

References 25 publications

The Lived Experience of Mothers of Children with Chronic Feeding and/or Swallowing Difficulties

The Lived Experience of Mothers of Children with Chronic Feeding and/or Swallowing Difficulties

Agreement between Internet-Based Self- and Proxy-Reported Health Care Resource Utilization and Administrative Health Care Claims

A clinical description of children with solid organ transplants who present with feeding disorder

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