Caregivers' experiences of Gastrostomy feeds: a Speech-Language Therapist's Role
Date
2022
Authors
Potgieter, Anna
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Abstract
Introduction: The insertion of a gastrostomy tube through the abdomen into the stomach is a common procedure for children with dysphagia or nutritional complications. This can be an emotionally laden decision for the caregivers of children requiring gastrostomy tubes. The caregiver’s decision-making process, and the emotional effects thereof, have not been well explored. Ongoing support from a multidisciplinary team (MDT) is essential in order to assist and guide the caregiver through the difficult decision-making and transition phase. The Speech-Language Therapist (SLT) plays a vital role as part of the MDT. This study aimed to describe the caregivers’ experiences of the decision-making process within the South African
context when they consider a gastrostomy tube for their child. The study included investigating the SLT’s role as perceived by the caregiver and the professional.
Methodology: This qualitative study was done using online questionnaires for thirteen caregivers of children with gastrostomy tubes in South Africa (SA), as well as for the twenty-three SLTs working in this setting. A follow-up focus group discussion was done with two willing caregivers. Participants were obtained using snowball sampling. All of the data was analyzed using a Reflexive Thematic Analysis approach following the six steps as set out by Braun and Clarke.
Results and discussion: The results show that the caregiver’s decision to obtain and make use of a gastrostomy tube for the child under their care is a complex and emotionally laden one. A caregiver’s experience can be altered by the information they obtain, or the information available to the caregiver, as well as their specific support needs and requirements. The themes that have emerged included the impact on the family system, the support system, and societal issues. It is further evident that SLTs could play a greater role in the decision-making process as well as in the subsequent support services to be provided to the caregiver. In the South African context, a lack of resources appears to further complicate the care and support provided. The education and training provided to caregivers may therefore be limited and the importance of education and training may be overlooked.
Conclusion: It is essential that healthcare providers are cognisant of how emotions and attitudes affect the family’s overall experience of a gastrostomy tube. Support and counselling are therefore an essential part of the process.
Implication: The results from this study were used to assist in creating a protocol. The protocol could assist SLTs in educating and guiding caregivers through their decisionmaking
processes when considering a potential gastrostomy tube. Further research would be required to assess the effectiveness of this protocol.
Description
A dissertation submitted in partial fulfilment of the requirements for the degree of Master of Arts in Speech Pathology to the Faculty of Humanities, School of Human and Community Development, University of the Witwatersrand, Johannesburg, 2022