'They don't know what to do with our children': Experiences and views on feeding and swallowing from parents of children who use long-term ventilation.

Increasing use of paediatric long-term ventilation (LTV) has been reported around the world over the last two decades and it is anticipated that use of this medical intervention will continue to grow. Research has shown that children who use LTV have risk factors for feeding and swallowing difficulties which result in long-term reliance on non-oral feeding methods. This Patient and Public Involvement (PPI) activity explored experiences of parents of children with LTV on their children's feeding and swallowing journeys. Individual and group interviews with seven parents were conducted. Interview data was then analysed using content analysis. Families discussed a range of themes including impacts on their family, facilitators and barriers to feeding and swallowing journeys, speech and language therapy (SLT) support, their family's healthcare journey in relation to quality of life and future directions for research. This study highlighted potential key areas to explore when identifying ways to improve SLT care and research in feeding and swallowing for children who use LTV.

Feeding and swallowing outcomes of children receiving long-term ventilation: A scoping review protocol.

BACKGROUND: The last three decades have seen a growth in the number of children requiring long-term ventilation. Children with long-term ventilation present with underlying respiratory and neurological conditions that place them at risk of feeding and swallowing difficulties. To date, a scoping review or systematic review investigating the feeding and swallowing outcomes of children with long-term ventilation needs has not been conducted. AIMS: This paper describes a protocol for a scoping review of the feeding and swallowing outcomes of children receiving long-term ventilation. METHODS: This scoping review protocol will utilize the Joanna Briggs Institute scoping review methodology guideline. Our review will focus on the feeding and swallowing outcomes of children aged 0 to 18 years with long-term ventilation needs. A full search strategy initially created by the authors and a research librarian was conducted on the PubMed database. Following this, pilot testing took place to determine discrepancies in eligibility criteria. A full search strategy will be conducted across several databases. A data extraction form has been developed by the authors and will be used during the scoping review process. DISCUSSION: This protocol has been created to provide a rigorous and comprehensive basis for undertaking a scoping review. All necessary steps have been completed in order to commence the scoping review. REGISTRATION: This scoping review protocol was registered on Open Science Framework on the 26th November 2021 (Registration DOI 10.17605/OSF.IO/NQBPD).

Feeding and Swallowing Outcomes in Children Who Use Long-Term Ventilation: A Scoping Review.

The last two decades have seen increasing use of long-term ventilation (LTV) as an intervention in childhood. Children who use LTV have many risk factors for feeding and swallowing difficulties, including their underlying respiratory and/or neurological etiology, long hospitalizations, medical interventions, and limited exposure to oral feeding experiences. This review aimed to answer two questions: 1) 'What specific swallowing and feeding characteristics do these children experience?'; and 2) 'What impacts do these swallowing and feeding characteristics have on health status and quality of life?'. Texts were identified across bibliographic databases, reference lists, and grey literature. Studies were analyzed according to ventilation, feeding and swallowing, assessment and intervention, and quality of life parameters. Overall, 1919 papers were screened, with 31 papers included in the final data extraction process. A range of feeding and swallowing characteristics were observed, including oral secretion management difficulties, oral aversion, swallowing difficulties, and clinical signs of aspiration. Non-oral feeding was found to be the primary feeding method used. Little information on health status and quality of life was reported in scoping review texts. Children with LTV needs present with a range of feeding and swallowing concerns, and non-oral feeding is common. Further research is needed to understand the feeding and swallowing journey of this population. This will assist in future service planning and delivery, and in turn contribute to improving patient outcomes and quality of life.

Telehealth language assessments using consumer grade equipment in rural and urban settings: Feasible, reliable and well tolerated.

Introduction Telehealth can be an effective way to provide speech pathology intervention to children with speech and language impairments. However, the provision of reliable and feasible standardised language assessments via telehealth to establish children's needs for intervention and to monitor progress has not yet been well established. Further, there is limited information about children's reactions to telehealth. This study aimed to examine the reliability and feasibility of conducting standardised language assessment with school-aged children with known or suspected language impairment via a telehealth application using consumer grade computer equipment within a public school setting. Method Twenty-three children (aged 8-12 years) participated. Each child was assessed using a standardised language assessment comprising six subtests. Two subtests were administered by a speech pathologist face-to-face (local clinician) and four subtests were administered via telehealth. All subtests were completed within a single visit to the clinic service, with a break between the face to face and telehealth sessions. The face-to-face clinician completed behaviour observation checklists in the telehealth and face to face conditions and provided feedback on the audio and video quality of the application from the child's point of view. Parent feedback about their child's experience was elicited via survey. Results There was strong inter-rater reliability in the telehealth and face-to-face conditions (correlation coefficients ranged from r = 0.96-1.0 across the subtests) and good agreement on all measures. Similar levels of attention, distractibility and anxiety were observed in the two conditions. Clinicians rated only one session of 23 as having poor audio quality and no sessions were rated as having poor visual quality. Parent and child reactions to the use of telehealth were largely positive and supportive of using telehealth to assess rural children. Discussion The findings support the use of telehealth in the language assessment of school-aged children using a web application and commercially available computer equipment. This reliable and innovative service delivery model has the potential to be used by speech pathologists to provide assessments to children in remote communities.

Supporting communication for children with cerebral palsy in hospital: views of community and hospital staff.

OBJECTIVE: We aimed to investigate the views of allied health and nursing staff on supporting the communication of children with cerebral palsy (CP) and complex communication needs (CCN) in hospital. METHOD: We conducted 12 focus groups with 49 community- and hospital-based allied health professionals and hospital nurses. RESULTS: Participants reported having active roles in supporting children's seating, mobility, equipment, mealtime management and psychosocial needs, but not in supporting the children's communication in hospital. Participants described several environmental barriers to supporting children's augmentative and alternative communication (AAC) in hospital, and suggested a range of strategies to ease communication difficulties at the bedside. CONCLUSION: Results indicate a potential new role for community- and hospital-based health professionals in supporting nurses to implement AAC strategies at the bedside. Supporting nursing staff to remove environmental barriers and use communication technologies might create a more communicatively accessible hospital ward for children with CP and CCN.