Care burden and support needs of caregivers of infants and children with CHDs and dysphagia.

Dysphagia is common in children with CHDs, resulting in multiple stressors for their caregivers including having a child with a serious medical condition and coping with their child's feeding needs. However, relatively little is known about caregivers' perceptions and experiences of the burden of care and support needs for their child with a CHD and dysphagia in low-middle income contexts. This qualitative study investigated the burden of care and support needs identified by parents of children with CHDs and dysphagia in a single centre in South Africa. Semi-structured interviews took place in a tertiary hospital with seven mothers of children with CHDs and dysphagia, followed by content analysis. Participants described four main impacts of their child's condition, which included worry, the burden of caregiving, emotional responses, and acceptance and coping. The participants were well-supported by speech-language therapists and dieticians, but suggestions for additional support included support groups and using mobile messaging apps for communication with peers and professionals. The study has important implications for understanding challenges faced by caregivers of children with complex needs in low-middle income settings and will be useful to inform and improve holistic healthcare practice for families of children with CHDs and dysphagia.

Prevalence of Feeding and Swallowing Disorders in Congenital Heart Disease: A Scoping Review.

Feeding and swallowing difficulties are commonly reported as comorbidities in infants and children with congenital heart disease. These difficulties have negative health consequences for the child and impact the quality of life of both the child and caregivers. This scoping review presents an integrated summary of the published literature on the prevalence of feeding and swallowing difficulties in congenital heart disease. Fifteen peer-reviewed articles, written in English and published in the last 25 years, were included in the review, following a search of relevant databases. The studies reported on a total of 1,107 participants across the articles ranging in age from premature infants to children aged 17 years. An overall pooled prevalence of 42.9% feeding and swallowing difficulties was reported, with a prevalence of 32.9% reporting aspiration. A wide prevalence range of feeding and swallowing difficulties was reported across the articles and factors that contributed to this included the ages of participants, and the definition and assessment of feeding and swallowing difficulties used in the studies. The review confirms that feeding and swallowing difficulties are common in infants and children with congenital heart defects, and that assessment and management of these difficulties should be considered part of the standard of care.

Incidence and description of dysphagia in infants and toddlers with tracheostomies: a retrospective review.

OBJECTIVE: An increasing number of infants and toddlers with tracheostomies were identified at a large paediatric referral hospital in South Africa. They are at risk for swallowing and feeding difficulties, however, there is limited literature reporting the incidence and describing the dysphagia in this population, and no literature specific to a developing country. The purpose of this study was therefore to report the incidence and describe the dysphagia in infants and toddlers with tracheostomies at a large paediatric referral hospital in South Africa. METHOD: A retrospective, descriptive review of the medical records of 80 infants and toddlers (0-3 years) with tracheostomies between 2002 and 2004 was conducted. RESULTS: Eighty percent (64/80) of the participants presented with dysphagic symptoms. Oral phase dysphagia was reported in 81.25% (52/64), pharyngeal phase dysphagia in 60.9% (39/64) and oesophageal phase dysphagia in 79.7% of the dysphagic participants. CONCLUSIONS: Infants and toddlers with tracheostomies are at increased risk for dysphagia. Multiple risk factors for dysphagia associated with tracheostomies, underlying medical conditions and the context of a developing country were identified in the study population.

Contextually relevant resources in speech-language therapy and audiology in South Africa--are there any?

In this editorial introduction we aim to explore the notion of contextually relevant resources. We argue that it is the responsibility of speech-language therapists (SLTs) and audiologists (As) working in South Africa to develop contextually relevant resources, and not to rely on the countries or cultures where the professions originated to do so. Language is often cited as the main barrier to contextually relevant resources: most SLTs and As are aware of the need for more resources in the local languages. However, the issue is not as straightforward as translating resources from English into other languages. The challenges related to culture, e.g. formal education and familiarity with the test situation, have to be considered, as well as the population on which norms were obtained and the nature of vocabulary or picture items. This paper introduces four original research papers that follow in this edition of the journal, and showcases them as examples of innovative development in our field. At the same time we call for the further development of assessment materials, intervention resources, and contributions to the evidence base in our context. We emphasise the importance of local knowledge to drive the development of these resources in innovative and perhaps unexpected ways, and suggest that all clinicians have an important role to play in this process.

Configurations of self-identity formations of adults who stutter.

It is important for clinicians to understand how adults who stutter construct who they are, i.e. their self-identity, in order to offer personally meaningful interventions. Early research on stuttering and self-concept provided initial knowledge, but there has been a dearth of further research in this field. This article, the third in a series of papers emanating from a doctoral study, provides new insight into the configurations of self-identity formations of adults who stutter. Previous articles from the study described how 'Able' (positive self-identity) and 'DisOther' (negative self-identity) self-identity formations developed over time. This paper describes the configurations of self-identities, Able and DisOther, evident across participants' stories. The study used a life-history methodology in which 7 adult participants (5 men and 2 women) shared their experiences of living with stuttering through open-ended interviews. The data from the interviews were analysed at two levels. The first level of analysis resulted in a description of the types of self-identity formations (positive and negative) and processes (personal, social and temporal) shaping the self-identity formations. This result was represented as a research story for each participant. The second level of analysis described the configurations of the self-identities, Able and DisOther, across the research stories. The main findings, illustrated through three research stories, were that the two types of self-identity formations, Able and DisOther, were present in singular and dual configurations. The dual presentation of self-identity formations occurred in co-existing, competing and coalescing configurations at particular time periods, illuminating the complexity of the stuttering experience. The clinical implications are discussed.