Walking the tightrope of dysphagia: insights from allied health professions working with children and young people in Australia.

PURPOSE: Dysphagia can negatively influence a child or young person's quality of life. There is currently limited in-depth qualitative data examining the impacts of dysphagia on children and young people from the perspectives the allied health professionals who provide supports that can shape their quality of life. This study examined the perspectives of allied health professionals on (a) the impact of dysphagia on quality of life and (b) barriers and facilitators to quality of life for children and young people (2-24 years) with dysphagia.

METHODS

In this ethically approved research, 16 allied health professionals engaged in focus group discussions. Video recorded discussions were transcribed verbatim then analyzed using Thematic Networks Analysis.

RESULTS

One global theme, three organizing themes, and 12 basic themes were identified. Managing dysphagia was like walking a tightrope. Participants described balancing various factors including the child's medical diagnoses versus their autonomy, the family, and creating positive mealtimes while minimizing harm. Participants described cascading impacts of dysphagia impacting on the child or young person and their family around them.

DISCUSSION: Health professionals need to collaborate with families, provide individualized education and advocate for balance of the physical and psychosocial needs of the child or young person.