Mothers' experiences caring for children with disabilities who require a gastrostomy tube

Spalding, Karen; McKeever, Patricia

doi:10.1016/s0882-5963(98)80050-x

Cited by 53 publications

(72 citation statements)

References 18 publications

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“…When the ideal of meeting a child's feeding needs with ease is unattainable, a perception of inadequacy may arise [13]. Though only a small number of studies have evaluated parental experiences of managing enteral feeding at home, what emerged was that it was often associated with caregiver burden, perceptions of loss, and a greater degree of stress was experienced relative to that of mothers with children who had disabilities but who could still be fed orally [3,5,14]. The initial decision to have a gastrostomy tube inserted was found to be difficult for mothers to make, which was not necessarily made easier where oral feeding was challenging [4].…”

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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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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confidence: 99%

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

Hewetson

Singh

2009

Dysphagia

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“…Each study identified one or more functional impairments targeted by the assistive device: accessing a computer 43 (30); independent feeding 28 (n=1); living skills 42 (n=1); mobility [19][20][21]24,44,45,47,55,64 (n=9), modifying the environment 59 (n=1); nutrition 40,53,61,63 (n=4); and postural stability 33,34 (n=2). Details of the studies included are presented in Table III.…”

Section: Resultsmentioning

confidence: 99%

“…9 Research is needed to enhance the picture of how assistive devices can benefit a child, their family, and their social environments to help guide clinicians in day-to-day practice. 15,40,61,63 (Difficulty caregiving 61 ) Less concern 40 (Loss of social supports 61 ) Quality of life 40 (Loss of privacy 61 ) Decreased stress 61 (Disappointment 63 ) (See child as more different 61 ) Postural Stability Pelvic stabilizer 34 Ease in caregiving 34 Only outcomes identified as having a positive or negative impact on the caregiver were included in this table. Measured outcomes where no impact was identified are not reported here.…”

Section: Resultsmentioning

confidence: 99%

“…Undesirable outcomes represented a larger proportion of caregiver-focused outcomes including increased difficulty in the activity of caregiving, 61 and impact on personal, 61,63,64 financial, 53 and social environmental 61 factors.…”

Section: Caregiver-focused Outcomes Within the Icfmentioning

confidence: 99%

“…In contrast, all four studies that targeted nutrition contained caregiver-focused outcomes. 40,53,61,63 …”

Section: The Body Structure and Function Domainmentioning

confidence: 99%

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Assistive devices for children with functional impairments: impact on child and caregiver function

Henderson

Skelton²,

Rosenbaum

2008

Develop Med Child Neuro

113

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Functional impairments can limit a child's ability to participate in the experiences of childhood. This‘deprivation’can, in turn, have a negative effect on such children's development, academic performance, and quality of life, as well as on the lives of their caregivers and families. Many adults use assistive devices to overcome functional impairments and enable them to participate in daily activities; however, such devices may be underutilized by children. Each of the 54 studies reviewed in this report identified one or more functional impairments towards which an assistive device was targeted: accessing a computer (n=3 [studies]), activity assistance (n=2), behaviour changes (n=3), communication (n=30), independent feeding (n=1), living skills (n=1), mobility (n=9), modifying the environment (n=1), nutrition (n=4), and postural stability (n=2). The aim of this review was to determine the impact of assistive devices on the components of functioning defined by the World Health Organization's International Classification of Functioning, Disability and Health. The impact of these devices was found to be overwhelmingly positive. Study outcomes reported were mainly child‐focused and could be classified as influencing activity, participation, and personal contextual factors, with relatively little attention paid to caregiver‐focused outcomes. Few studies provided either qualitative evidence or experimentally‐based quantitative research evidence using controls.

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Gastrostomy feeding versus oral feeding alone for children with cerebral palsy

Sleigh

Sullivan

Thomas³

2002

The Cochrane Database of Systematic Reviews

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Mothers' experiences caring for children with disabilities who require a gastrostomy tube

Cited by 53 publications

References 18 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

Assistive devices for children with functional impairments: impact on child and caregiver function

Gastrostomy feeding versus oral feeding alone for children with cerebral palsy

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