Search

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 multi‐disciplinary 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. [ABSTRACT FROM AUTHOR]

Clinical practice guidelines for paediatric neuromuscular disorders (NMDs) recommend timely provision of wheelchair equipment. The aim of this qualitative study was to understand healthcare professionals' clinical perspectives and practices when recommending wheelchair equipment for the first time, as well as perceived barriers and enablers to timely wheelchair provision. Twenty-one healthcare professionals (HCPs) from Australia and the United States participated in an interview (response rate: 88%, 16/21 women). Participants were from diverse disciplines, based in hospital or community health settings, and had at least one year of experience working in paediatric neuromuscular care. Child fatigue, falls and engagement in age-appropriate activity were common reasons for HCP's wheelchair recommendation. HCPs were acutely aware of parents' experiences of grief and loss throughout the wheelchair prescription process, and over half acknowledged the lack of psychological care available to families affected by NMDs. Multi-disciplinary collaboration, psychologically-informed care, and shared decision-making with stakeholders were perceived enablers of wheelchair transition. Barriers included limited access to equipment, lengthy funding processes and lack of funding for home and vehicle modifications. Integrated psychosocial care is needed to support families throughout their child's disease progression, including wheelchair transition. Implementation of readiness for change tools, and development of tailored informational resources is recommended. Improved access to equipment options and trials, and more efficient funding processes are highly likely to improve parental engagement throughout the wheelchair prescription process. Healthcare professionals express a strong demand for integrated psychosocial care within paediatric neuromuscular clinics to support families throughout transitions, including wheelchair introduction. Identifying parents' readiness for change can inform their information and support needs, strengthen their decision-making capacity and facilitate timely wheelchair introduction. Stronger collaboration between hospital- and community-based health professionals working in paediatric neuromuscular care is recommended to facilitate knowledge exchange and support families' transition to wheelchair use. Access to equipment options for extended loan or trial in the community can support timely wheelchair introduction. [ABSTRACT FROM AUTHOR]