Barriers to care: Caregivers' accounts of raising a child with a communication disorder.

BACKGROUND:  There exists a dearth of research on the psychological experiences of childhood communication disorders. Caregivers of these children are one source who can provide us with this information since the child exists within a system. Literature on the experiences of caregivers of children with communication disorders, specifically in the South African city context, is lacking. OBJECTIVES:  The article presents the reported experiences of six parental caregivers raising a child with a communication disorder within Johannesburg. METHOD:  Data were collected via semi-structured interviews and underwent an interpretative phenomenological analysis. RESULTS:  Five themes are presented: feeling out of control; barriers to accessing services; caregivers left speechless; a misunderstood disability; and relinquishing control: 'I needed to be a mommy'. CONCLUSION:  The caregivers relayed an initially negative experience in raising a child with a communication disorder, marred with worry and fear for the future. In accessing services, they narrated their experiences of multiple barriers to access, including an overreliance on the private sector, financial barriers, time constraints, limited resources and poor information on available resources. Eventually, the caregivers were able to identify strengths, skills and capabilities within their children and themselves that allowed for adjustment and coping.Contribution: The findings highlight the importance of considering how barriers to care may marginalise and seclude parental caregivers. Over time, the caregivers were able to empower themselves through building their own knowledge and reformulating their narratives by challenging assumptions and retitling the source of disability as a product of the failure of society.

Canadian surveillance study of complex regional pain syndrome in children.

ABSTRACT: This study describes the minimum incidence of pediatric complex regional pain syndrome (CRPS), clinical features, and treatments recommended by pediatricians and pain clinics in Canada. Participants in the Canadian Paediatric Surveillance Program reported new cases of CRPS aged 2 to 18 years monthly and completed a detailed case reporting questionnaire from September 2017 to August 2019. Descriptive analysis was completed, and the annual incidence of CRPS by sex and age groupings was estimated. A total of 198 cases were reported to the Canadian Paediatric Surveillance Program, and 168 (84.8%) met the case definition. The minimum Canadian incidence of CRPS is estimated at 1.14/100,000 (95% confidence interval 0.93-1.35/100,000) children per year. Incidence was highest among girls 12 years and older (3.10, 95% confidence interval 2.76-3.44/100,000). The mean age of CRPS diagnosis was 12.2 years (SD = 2.4), with the mean time from symptom onset to diagnosis of 5.6 months (SD = 9.9) and no known inciting event for 19.6% of cases. Most cases had lower limb involvement (79.8%). Nonsteroidal anti-inflammatory drugs (82.7%) and acetaminophen (66.0%) were prescribed more commonly than antiepileptic drugs (52.3%) and antidepressants (32.0%). Referrals most commonly included physical therapy (83.3%) and multidisciplinary pain clinics (72.6%); a small number of patients withdrew from treatment because of pain exacerbation (5.3%). Pain education was recommended for only 65.6% of cases. Treatment variability highlights the need for empiric data to support treatment of pediatric CRPS and development of treatment consensus guidelines.