Paediatric tube‐feeding: An agenda for care improvement and research

Hopwood, Nick; Moraby, Khadeejah; Gowans, Jessica; Pointon, Keren; Ierardo, Anna; Reilly, Claire; Syrmis, Maryanne; Frederiksen, Nadine; Disher-Quill, Kate; Scheuring, Noémi; Heves, Rudolf; Elliot, Chris

doi:10.1111/jpc.15286

Cited by 11 publications

(13 citation statements)

References 44 publications

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“…The images share the challenges of parenting children who tube-feed, while celebrating courage, and children as playful, happy, nurtured, loved and accepted [12]. Another thread in this activist work involves advocacy for change in healthcare, co-writing an agenda for research and care improvement, co-authored with parents and clinicians [27]. Central to this is improving care by addressing the tube-feeding life-cycle, from tube initiation to tube-weaning (or for those for whom weaning is not possible, transitioning to long-term tube-feeding).…”

Section: Narratives Of Change From An Unfolding Collaborative Activis...mentioning

confidence: 99%

Changing the World for Children with Complex Feeding Difficulties: Cultural-Historical Analyses of Transformative Agency

Hopwood

Elliot²,

Pointon³

2021

Cultural-Historical Psychology

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How to bring about positive change is a key concern in cultural-historical theory. There is an urgent imperative to address questions of transformation at the nexus of the individual and the social. One way to approach this is through the concept of agency, the means through which people go beyond coping with problems or adapting to the status quo, instead striving to make the future that ought to be a reality. This paper takes up ideas from Stetsenko’s transformative activist stance (TAS), Sannino’s transformative agency by double stimulation (TADS), and Edwards’ relational agency, tracing the emergence and enactment of agency among parents of children with complex feeding difficulties. These children were unable to eat orally, instead using a tube to feed. Each family strived towards, and realised, futures where their child was able to feed orally, without a tube. Parents acted agentically in ways that were contingent upon relevant cultural tools. Such tools are key to futures that are more inclusive, equitable and nurturing for all children and their families. The paper highlights the value of contemporary cultural-historical approaches to agency in understanding and provoking transformation at the nexus of the individual and social.

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Section: Narratives Of Change From An Unfolding Collaborative Activis...mentioning

confidence: 99%

Changing the World for Children with Complex Feeding Difficulties: Cultural-Historical Analyses of Transformative Agency

Hopwood

Elliot²,

Pointon³

2021

Cultural-Historical Psychology

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“…These include (but are not limited to) cerebral palsy, neurodevelopmental disabilities, cleft palate, cystic fibrosis, prematurity, recovery postsurgery, and ill health 6–8 . As such, ‘There are multiple, complex pathways to paediatric tube‐feeding’ 2 . p. 1…”

Section: Introductionmentioning

confidence: 99%

“…Many children, worldwide, require a tube to maintain adequate nutrition, orally 1 . Paediatric feeding disorder requiring tube‐feeding (PFD‐T) 2 might involve the following: a nasogastric tube, which is inserted into the nose and through to the stomach; an orogastric tube, which is inserted into the mouth and through to the stomach; or a percutaneous endoscopic gastrostomy tube, which is surgically inserted into the stomach. Although it is difficult to estimate the prevalence of PFD‐T, it is said to be between 1 and 4 children per 100,000 3 .…”

Section: Introductionmentioning

confidence: 99%

‘it was that … specialist … that finally listened to us … that's probably a weird answer to what you were expecting’: Clinician and carer perspectives on brilliant feeding care

Kaplun

Hopwood

et al. 2022

Health Expectations

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Introduction To extend research on positive aspects of health care, this article focusses on health care for children who tube‐feed—this is because knowledge about tube‐feeding for children is limited and fragmented. This is achieved by consulting with clinicians and carers who supported children who tube‐feed to clarify their understandings of and experiences with brilliant feeding care. Methods Nine clinicians and nine carers who supported children who tube‐fed were interviewed. The interview transcripts were analysed thematically. Results Findings highlighted several features of brilliant feeding care—namely: practices that go above and beyond; attentiveness; empowerment; being ‘on the same page’; hopefulness and normalcy. Conclusions These findings show that seemingly trivial or small acts of care can make a significant meaningful difference to carers of children who tube‐feed. Such accounts elucidate brilliant care as grounded in feasible, everyday actions, within clinicians' reach. The implications associated with these findings are threefold. First, the findings highlight the need for clinicians to listen, be attuned and committed to the well‐being of children who tube‐feed and their carers, share decision‐making, source resources, and instil hope. Second, the findings suggest that carers should seek out and acknowledge clinicians who listen, involve them in decision‐making processes, and continue to source the resources required to optimize child and carer well‐being. Third, the findings point to the need for research to clarify the models of care that foster brilliant feeding care, and the conditions required to introduce and sustain these models. Patient or Public Contribution All of the carers and clinicians who contributed to this study were invited to participate in a workshop to discuss, critique, and sense‐check the findings. Three carers and one clinician accepted this invitation. Collectively, they indicated that the findings resonated with them, and they agreed with the themes, which they indicated were well‐substantiated by the data.

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“…In addition, parents have reported challenges bonding with their child through the lack of typical feeding routines and the broader impacts of sleep disturbance, restricted family activities and outings, altered family relationships and challenges associated with public perceptions of them and their child (Brotherton et al, 2007;Hopwood et al, 2020;Tarbell & Allaire, 2002). This increasing awareness of the impact of tube feeding on the child and family has stimulated research on best care practices for children who may be suitable for weaning (Clouzeau et al, 2021;Hopwood et al, 2020Hopwood et al, , 2021. However, tube weaning is complex and associated with significant challenges for the child and their parents/caregivers, as both parties transition through complex learning processes, in which (i) the child learns to recognize hunger/thirst, trust the mealtime process, develop oral skills required for chewing and swallowing and desensitize themselves to previously negative stimuli (i.e.…”

mentioning

confidence: 99%

“…Mothers' experiences and perceptions whilst undertaking tube weaning have been investigated, and key themes identified were maternal emotional stress, collaboration with the team and resumption of a more typical family life (Cipolla et al, 2022). Although the high levels of maternal responsibility and expertise in tube feeding have become increasingly acknowledged (Clouzeau et al, 2021;Hopwood et al, 2020Hopwood et al, , 2021Tarbell & Allaire, 2002), we are yet to understand the barriers, facilitators and emotional journey mothers and fathers experience during the tube weaning process. This understanding will help facilitate targeted and timely healthcare and is key to improving the experiences and outcomes for the child and family.…”

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confidence: 99%

Parents' experiences of their child's transition from tube to oral feeding during an intensive intervention programme

Lively

McAllister

Doeltgen

2022

Child

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Background: Persistent enteral tube feeding beyond the point of medical and/or physical necessity provides important nutrition to a child but may have implications for their development, gastrointestinal tract and quality of life. Tube dependency can affect parent-child relationships and sibling and family dynamics and place additional medical demands upon parents. It is therefore important to transition children from tube to oral eating and drinking as soon as is medically safe to do so. Tube weaning requires a skilled team to support the transition to oral intake; however, access to experienced teams is inconsistent. Without transparent discussions with their treating teams, many parents are left to navigate tube weaning options independently.Methods: Fourteen parents were interviewed using semi-structured interviews. We explored the experiences of parents across their child's progression towards oral feeding, from the decision-making process to undertaking an intensive multidisciplinary tube weaning programme. Thematic analysis of the parents' stories shaped the development of seven themes.Results: Parents were unaware that tube weaning would be required and how that would be facilitated. They expressed a strong belief that their child could learn to eat-if afforded an opportunity. Furthermore, parents are prepared to disengage from current services if they feel they are not respected members of their child's therapeutic team. Three key learnings were identified relating to the need for tube exit plans, parents as key team members and parents as change agents.Conclusions: Parenting a tube-fed child, initiating and engaging in tube weaning, is a stressful and emotional journey. However, by establishing care partnerships, parents are willing to put trust in a process if provided with options and afforded autonomy, empowerment, acknowledgement and relevant support.

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Paediatric tube‐feeding: An agenda for care improvement and research

Cited by 11 publications

References 44 publications

Changing the World for Children with Complex Feeding Difficulties: Cultural-Historical Analyses of Transformative Agency

Changing the World for Children with Complex Feeding Difficulties: Cultural-Historical Analyses of Transformative Agency

‘it was that … specialist … that finally listened to us … that's probably a weird answer to what you were expecting’: Clinician and carer perspectives on brilliant feeding care

Parents' experiences of their child's transition from tube to oral feeding during an intensive intervention programme

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