Evans, James;
(2023)
A Mixed Methods Study Investigating Complications, Outcomes and Family Experiences of Gastrostomy Feeding in Paediatric Allogeneic Bone Marrow Transplant.
Doctoral thesis (Ph.D), UCL (University College London).
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Abstract
Background: Bone marrow transplant (BMT) is a potential treatment for children with various diseases. Chemotherapy provided during BMT causes side effects including diarrhoea and vomiting meaning all children become unable to eat and require tube feeding. All United Kingdom centres use nasogastric tubes. Great Ormond Street Hospital offer families an alternative, a gastrostomy. Minimal research exists on gastrostomies in this population. Aim: Investigate complications, outcomes and family (parent and child) experiences of gastrostomy feeding. Methods: A single-centre, convergent mixed methods study was conducted. Phase one included a systematic review of gastrostomy complications in paediatric cancer/BMT and a national survey of clinicians’ opinions toward gastrostomies. Phase two contained a prospective cohort study comparing outcomes between both tubes which ran in parallel to interviews with parents and children exploring their experiences of tube feeding. Results: Gastrostomy complications occurred in 87% of children in the cohort study, but 94% were minor. The systematic review found 85% of complications were minor. The survey showed 58% of centres did not currently use gastrostomies but 75% of clinicians wanted to use them more. Clinicians felt gastrostomies would be a burden to families and negatively impact body image. No differences were found between tubes on supporting children’s weight or nutritional intake. Interviews revealed parents undertake a complex decision- making process, weighing up pros and cons of either tube, alongside prior experiences and lay advice before making their choice. All felt choice should be offered. Parents and children viewed both tubes as an asset, particularly to administer medications. Many preferred the discreteness of gastrostomies. Conclusions: Clinicians’ concerns regarding gastrostomies including infection, surgery, burden and impact on body image, were unfounded by evidence from the systematic review, cohort study and/or parent and child interviews. Choice of a gastrostomy or nasogastric tube should be offered to families undergoing BMT. Counselling through a multidisciplinary approach alongside peer-support is crucial to helping families make an informed choice.
| Type: | Thesis (Doctoral) |
|---|---|
| Qualification: | Ph.D |
| Title: | A Mixed Methods Study Investigating Complications, Outcomes and Family Experiences of Gastrostomy Feeding in Paediatric Allogeneic Bone Marrow Transplant |
| Open access status: | An open access version is available from UCL Discovery |
| Language: | English |
| Additional information: | Copyright © The Author 2023. Original content in this thesis is licensed under the terms of the Creative Commons Attribution-NonCommercial 4.0 International (CC BY-NC 4.0) Licence (https://creativecommons.org/licenses/by-nc/4.0/). Any third-party copyright material present remains the property of its respective owner(s) and is licensed under its existing terms. Access may initially be restricted at the author’s request. |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Div of Medicine |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10184452 |
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