IN FOUCS: Building Collaborative Partnerships - 2023
Permanent URI for this collectionhttp://repository.kln.ac.lk/handle/123456789/26727
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Item Parental experiences of the decision-making process regarding percutaneous endoscopic gastrostomy tube insertion and its post-management in children with developmental disabilities accessing a university clinic in Sri Lanka.(University of Kelaniya, Sri Lanka, 2023) Kumarasinghe, J.K.S.T.; Hettiarachchi, S.BACKGROUND: Feeding difficulties are common in children with developmental disabilities and the Percutaneous Endoscopic Gastrostomy tube is the most common long-term alternative feeding method used among them. Anecdotally in the Sri Lankan context, there appears to be a reluctance to go through a PEG insertion. There is a need to undertake a research study on the parental decision-making process and the post-management of PEG to understand how speech and language therapist can better support parents. OBJECTIVE/S: The main purpose of this study was to explore the parental experiences on the decisionmaking process regarding PEG insertion and its post-management in children with developmental disabilities accessing a university clinic in Sri Lanka. METHODS: This was a qualitative study using a phenomenological approach. Ten parents who have a child with a developmental disability, aged between one to eight years with one to three years of PEG experience with their children were the participants of this study. Semi-structured interviews were conducted using an interview guide which consisted of 10 questions. The qualitative data were analyzed using a simple thematic analysis. RESULTS: The study results indicate the lack of awareness and miscommunication with professionals throughout the decision-making process of PEG and the lack of parental satisfaction with it. However, they were satisfied with the speech and language therapist’s involvement in both decision-making and the monitoring process in the post-management of the PEG procedure. Also, negative societal views made the parents reluctant to consider a PEG and it affected post-PEG management as well by limiting societal participation in meal times due to visibility. The parents also described the strengths and challenges of post-PEG management. All the parents were satisfied with the decision that they made to go through with a PEG for their children with developmental disabilities due to the lack of complications on the PEG procedure and as a long-term alternative feeding method. CONCLUSION/S: Parental awareness on the PEG procedure supports the decision-making process. Professional involvement is important in providing adequate information with a key role for the speech and language therapist.Item Parents’ self- reported experience of feeding-related care of their premature infants while admitted to a neonatal intensive care unit in Sri Lanka: A qualitative study(University of Kelaniya, Sri Lanka, 2023) Bandara, P.M.N.M.; Hettiarachchi, S.BACKGROUND: Preterm infants experience various medical, neurological and developmental complications that may affect feeding skills. They are admitted to the neonatal intensive care unit (NICU) for special care and monitoring. Anecdotally, during the hospitalization in the local NICU, mothers’ and fathers’ involvement and confidence in the feeding-related care of their premature infants is low and there is a lack of interaction between the infant. OBJECTIVE/S: The main objective of this study was to explore both mothers’ and fathers’ experience of feeding-related care of their premature infants while admitted to a Neonatal Intensive Care Unit in Sri Lanka. METHODS: A qualitative study using a phenomenological approach was carried out with a sample of ten couples of participants including ten mothers and ten fathers who have premature infants (born between 28 -37 weeks gestational age) with feeding difficulties who have been hospitalized at a neonatal intensive care unit. A semi structured interview was conducted via telephone using an interview guide with 15 open ended questions. A simple thematic analysis was used to analyze the qualitative data. RESULTS: The findings were analyzed and main three themes and subthemes emerged. The main themes were Parental role, Parent- infant closeness and separation in NICUs and Speech and Language Therapy services support for feeding related care in a local NICU. The results illuminated that the majority of mothers had a minimal role in the NICU and all the fathers reported that they have been excluded from infant care in the NICU. CONCLUSION/S: Overall there is a lack of satisfaction on the minimal involvement in infant feeding care in the NICU which was a major parent. There is a difference between mothers’ and fathers’ perceived experience and knowledge they have received during hospitalization of their infant in the local NICU. In Sri Lanka (a Global South country) fathers are the ‘forgotten’ parent in terms of early feeding interventions. Parents show a satisfaction about the support of the NICU staff and SLT. Speech and language therapists need to take a lead in offering more information and training to parent and involve them more directly in feeding related infant care. The findings of the study will be helpful to make recommendations regarding feeding when working with parents and infants in the SLT clinical settings.