Negotiating mothering against the odds: Gastrostomy tube feeding, stigma, governmentality and disabled children

Craig, Gillian; Scambler, Graham

doi:10.1016/j.socscimed.2005.07.007

Cited by 56 publications

(59 citation statements)

References 13 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…This research emphasizes the importance of understanding the symbolic meanings of GFTs in relation to maternal identity, the maternal role, food, feeding, eating and child development. [17][18][19][20][21][22] FEEDING AND THE MOTHERING ROLE The suggestion of a GFT may challenge the 'good mother narrative' and signify maternal failure. Mothers may blame themselves for the child's inability to feed and poor growth or feel blamed by members of the extended family.…”

Section: Introductionmentioning

confidence: 99%

“…24 Although parents may feel anxious about a child having an operation, the decision to elect for a GFT can be viewed as distinctive because feeding children as well as their growth and development are often deemed to be the responsibility of mothers. 22 Caregivers may find feeding stressful but this does not always indicate their readiness to accept a GFT. Feeding may be described as 'difficult' or 'slow' or even akin to a 'war' or 'battle' 17 reflecting the difficulties around feeding.…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Psychosocial aspects of feeding children with neurodisability

Craig

2013

Eur J Clin Nutr

View full text Add to dashboard Cite

The psychosocial support needs of parents considering a gastrostomy feeding tube for their disabled child are often overlooked, yet there is a growing body of evidence that attests to the decisional conflicts parents, often mothers, experience. This may be in addition to the stress associated with feeding a disabled child. The support needs of families and caregivers should be assessed, including the values parents attach to oral and tube feeding. Structured support should be embedded within the care pathway and both professionals, and service users, with appropriate training should be identified to ensure parental information needs, and any emotional, practical and financial issues are addressed.

show abstract

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Psychosocial aspects of feeding children with neurodisability

Craig

2013

Eur J Clin Nutr

View full text Add to dashboard Cite

show abstract

“…Relatively few international studies [4][5][6][7] and one in South Africa [8] have examined the everyday experiences of caring for a child with chronic feeding difficulties, and little information is available on factors that enable or hinder a mother's capacity to provide such care. Mothers and other caregivers may feel unprepared for the demands of caring for a child who requires adapted feeding strategies [5,9,10]. Mealtimes are often described as difficult.…”

mentioning

confidence: 99%

“…Mealtimes are often described as difficult. Parents describe ambivalent feelings about oral as opposed to enteral feeding [9]. Inconsistent advice and techniques taught by professionals, together with the manner in which information is provided, were identified as sources of stress [7,11].…”

mentioning

confidence: 99%

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

Hewetson

Singh

2009

Dysphagia

View full text Add to dashboard Cite

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.

show abstract

“…These measures are clearly important and relatively easy to quantify, but swallowing problems and the provision of nutrition cannot satisfactorily be reduced to mechanics and biochemistry. There are undeniable psychological, social, and emotional elements that are rarely addressed in depth [8][9][10][11]. Where quality of life is addressed in a study, participants seem to rarely choose to comment.…”

mentioning

confidence: 99%

A Pilot Study Exploring the Factors that Influence the Decision to have PEG Feeding in Patients with Progressive Conditions

2008

View full text Add to dashboard Cite

This original pilot study was conducted to explore and understand the factors that influence a patient's decision-making when considering percutaneous endoscopic gastrostomy placement for nonoral nutrition and hydration supplementation. Seven patients living with progressive dysphagic symptoms who had made a decision about percutaneous endoscopic gastrostomy placement were interviewed and their responses analyzed using the constant comparison method. All participants felt they had no option other than to accept the percutaneous endoscopic gastrostomy. The impact of visible physical deterioration and medical opinion were the most powerful influences on patients' decisions. Patients' perception of their involvement in the decision varied. This was linked to the amount and timing of information supplied and support they felt they received. Few patients have prior knowledge of tube feeding and rely heavily on medical advice. Effective communication by healthcare professionals can promote an environment that is supportive of patients' involvement in decisions. Adequate preparation time is vital if patients are to stop feeling uninvolved or peripheral to the decision-making process. Multidisciplinary teams need to address their working practices so that they do not intimidate patients, but rather empower patients in their decision-making.

show abstract

Negotiating mothering against the odds: Gastrostomy tube feeding, stigma, governmentality and disabled children

Cited by 56 publications

References 13 publications

Psychosocial aspects of feeding children with neurodisability

Psychosocial aspects of feeding children with neurodisability

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

A Pilot Study Exploring the Factors that Influence the Decision to have PEG Feeding in Patients with Progressive Conditions

Contact Info

Product

Resources

About