The first year: the support needs of parents caring for a child with an intellectual disability

AIM: To describe the support needs of parents caring for a child with an intellectual disability in the first year of life. BACKGROUND: Parents of children with intellectual disabilities face significant challenges during the first year of their child's life which is an important developmental period not previously addressed in the literature. The provision of support by health professionals, particularly nurses and midwives, during this crucial period can impact on parental well-being and on the health and developmental outcomes of their children. However, parents often feel unsupported. DESIGN: The study used a qualitative descriptive methodology. METHODS: Semi-structured interviews were conducted with parents of eleven children with an intellectual disability in Victoria, Australia, during 2014. Interviews were digitally recorded, transcribed verbatim and analysed using thematic data analysis. FINDINGS: Three key areas of support need were identified to assist parents to provide effective care for their child with an intellectual disability in the first year of life: (1) emotional support as parents adjusted to their role of caring for a child with an intellectual disability; (2) information support as they embarked on a quest for knowledge; and (3) support to facilitate their connection to peer networks. The findings highlighted inconsistent provision of support for parents. CONCLUSION: This study informs health professionals about how to provide holistic, timely support to parents of children with intellectual disabilities in the first year of life. There is an urgent need to review how nurses and midwives can provide relevant support that is responsive to parents' needs.

The diagnosis of attention-deficit/hyperactivity disorder in Australian children: current paediatric practice and parent perspective

Aims In a sample of newly diagnosed children with attention-deficit/hyperactivity disorder (ADHD), the aims were to examine (1) paediatrician assessment and management practices; (2) previous assessments and interventions; (3) correspondence between parent-report and paediatrician identification of comorbidities; and (4) parent agreement with diagnosis of ADHD. Methods Design: cross-sectional, multi-site practice audit with questionnaires completed by paediatricians and parents at the point of ADHD diagnosis. Setting: private/public paediatric practices in Western Australia and Victoria, Australia. Main outcome measures: paediatricians: elements of assessment and management were indicated on a study-designed data form. Parents: ADHD symptoms and comorbidities were measured using the Conners 3 ADHD Index and Strengths and Difficulties Questionnaire, respectively. Sleep problems, previous assessments and interventions, and agreement with ADHD diagnosis were measured by questionnaire. Results Twenty-four paediatricians participated, providing data on 137 patients (77% men, mean age 8.1 years). Parent and teacher questionnaires were used in 88% and 85% of assessments, respectively. Medication was prescribed in 75% of cases. Comorbidities were commonly diagnosed (70%); however, the proportion of patients identified by paediatricians with internalising problems (18%), externalising problems (15%) and sleep problems (4%) was less than by parent report (51%, 66% and 39%). One in seven parents did not agree with the diagnosis of ADHD. Conclusions Australian paediatric practice in relation to ADHD assessment is generally consistent with best practice guidelines; however, improvements are needed in relation to the routine use of questionnaires and the identification of comorbidities. A proportion of parents do not agree with the diagnosis of ADHD made by their paediatrician.

Child injury in Brisbane South 1985-91: Implications for future injury surveillance

Specific childhood injury types are ranked by occurrence rate for mortality, hospital admission and emergency department attendance. Cases are drawn from the resident population of Brisbane South, 0-13 years of age, for the period 1 July 1985 to 30 June 1991. A total of 47,244 injuries, 7056 admissions and 99 deaths were analysed. The overall mortality rate was 12.6/100,000 per year (95% confidence interval (CI), 10.2-15.3), the overall admission rate was 911/100,000 per year (95% CI, 890-932) and the overall hospital attendance rate was 6013/100,000 per year (95% CI, 5958-6067). A fall was the most frequent injury mechanism for admissions and 65% of attendances involved injury in the child's own home. The surveillance data establish regional variation for childhood injury risk within Australia and identify an unexplained downward trend in head injury that requires further investigation. The future development of injury surveillance in Australia requires simplified coding which can be integrated into new computerized patient management information systems. Article in Journal of Paediatrics and Child Health 30(2):114-22 · May 1994

Changes in the prevalence of breast feeding in preterm infants discharged from neonatal units : a register study over 10 years

Objective: There are indications that the prevalence of exclusively breastfed preterm infants is decreasing in Sweden. The objective was to investigate trends in exclusive breast feeding at discharge from Swedish neonatal units and associated factors in preterm infants. Design, setting and participants: This is a register study with data from the Swedish Neonatal Quality Register. Data from 29 445 preterm infants (gestational age (GA) <37 weeks) who were born during the period 2004–2013 were retrieved. Data included maternal, perinatal and neonatal characteristics. Data were analysed for the whole population as well as for 3 GA groups. Results: From 2004 to 2013, the prevalence of exclusive breast feeding decreased, in extremely preterm (GA 22–27 weeks) from 55% to 16%, in very preterm (GA 28–31 weeks) from 41% to 34% and in moderately preterm infants (GA 32–36 weeks) from 64% to 49%. The decline was statistically significant (p<0.001) in all 3 GA groups. This decline remained significant when adjustments were made for factors negatively associated with exclusive breast feeding and which became more prevalent during the study period, that is, small for GA (all groups) and maternal mental illness (very preterm and moderately preterm infants). Conclusions: In the past 10 years, Sweden has experienced a lower rate of exclusive breast feeding in preterm infants, especially in extremely preterm infants. The factors analysed in this study explain only a small proportion of this decline. The decline in exclusive breast feeding at discharge from neonatal units raises concern and present challenges to the units to support and promote breast feeding.

Imaginarios sociales de adolescentes y docentes en torno al cuerpo, la corporalidad y la actividad física. Estudio cualitativo en un colegio de Bogotá, 2014-2015.

Problema. Esta investigación se aproxima al entorno escolar con el propósito de avanzar en la comprensión de los imaginarios de los adolescentes y docentes en torno al cuerpo, la corporalidad y la AF, como un elemento relevante en el diseño de programas y planes efectivos para fomento de la práctica de AF. Objetivo. Analizar los imaginarios sociales de docentes y adolescentes en torno a los conceptos de cuerpo, corporalidad y AF. Métodos. Investigación de corte cualitativo, descriptivo e interpretativo. Se realizaron entrevistas semi-estructuradas a docentes y a estudiantes entre los 12 y 18 años de un colegio público de Bogotá. Se realizó análisis de contenido. Se compararon los resultados de estudiantes por grupos de edades y género. Resultados. Docentes y estudiantes definen el cuerpo a partir de las características biológicas, las diferencias sexuales y las funciones vitales. La definición de corporalidad en los estudiantes se encuentra ligada con la imagen y la apariencia física; los docentes la entienden como la posibilidad de interactuar con el entorno y como la materialización de la existencia. La AF en los estudiantes se asocia con la práctica de ejercicio y deporte, en los docentes se comprende como una práctica de autocuidado que permite el mantenimiento de la salud. Conclusiones. Para promover la AF tempranamente como una experiencia vital es necesario intervenir los espacios escolares. Hay que vincular al cuerpo a los procesos formativos con el propósito de desarrollar la autonomía corporal, este aspecto implica cambios en los currículos.