“It's bigger than Ben-hur”: impacts of dysphagia on quality of life from the perspective of children, young people and their parents

Objectives: There is currently limited in-depth qualitative research from the perspective of children and young people with dysphagia and their parents/ care givers on the impacts of dysphagia on their quality of life. This study aims to gain an in-depth understanding of the (a) impacts of dysphagia on quality of life, participation, and inclusion of children/ young people, and (b) barriers and facilitators to quality of life. Methods: Children and young people (2-24 years) with dysphagia and their parents/ care givers were recruited to engage in a one-hour semi-structured interview. The participant’s dysphagia diagnosis was confirmed at the time of the interview using the Dysphagia Disorders Survey. All interviews were transcribed verbatim and analyzed using content thematic analysis through NVivo. Results: Four children and four parents engaged in the research. Participants described mealtimes as a balancing act to meet the child’s nutritional, physical and sensory needs while also facilitating autonomy, choice, and enjoyment. Swallowing difficulties often impacted the entire family as family members chose foods or modified the mealtime environment to meet the child’s needs. The impacts on the child’s inclusion and participation increased as they grew and became more aware of their difficulties and differences. Parents frequently facilitated the child’s quality of life by advocating for their needs. Barriers to quality of life included difficulties with navigating the health system and managing co-occurring diagnoses that also impacted on mealtime engagement. Conclusions: Multiple factors impact on the quality of life of children and young people with dysphagia and their families. Health professionals need to work in collaboration with families to ensure all facets of quality of life are considered. Further research is needed to determine how these impacts align with the perspectives of allied health professionals to determine if further efforts can be made to improve mealtimes.