The use of diet modifications and third-party disability in adult dysphagia: The unforeseen burden of caregivers in an economically developing country

Abstract

Background: One of the interventions for dysphagia is diet modifications, involving a variety of resources and consumables. In South Africa, where 49% of the population live below the poverty line, the necessities for it are not always feasible for the patient and their family. This coupled with the responsibility of caring for a loved one with disability can culminate into caregivers experiencing third-party disability (TPD).

Objective: To describe the experiences of TPD of caregivers when implementing dysphagia management strategies at home within an economically developing country context.

Methods: This was a qualitative study using phenomenological principles. Data were collected using a semi-structured self-developed interview tool at three tertiary level public sector hospitals. Seven participants and six caregivers were interviewed. Rigour was obtained through credibility, triangulation, transferability, dependability and confirmability. The data were analysed using a thematic content analysis technique following a top-down approach to coding.

Results: The use of diet modification is an appropriate management strategy if the patients’ access and contextual limitations have been taken into consideration. It was evident that the caregivers had multiple International Classification of Functioning, Disability and Health domains affected, which restricted their daily functioning including activities, participation and environmental and personal factors.

Conclusion: The management of dysphagia needs to be family centred and the caregiver’s role and needs have to be considered by all team members when determining long-term management plans. The specific area of how the caregiver’s quality of life was experienced also required further exploration.