All Outputs (5)

Development of the parental needs scale for rare diseases : a tool for measuring the supportive care needs of parents caring for a child with a rare disease (2016)
Journal Article
Pelentsov, L., Fielder, A., Laws, T., & Esterman, A. (2016). Development of the parental needs scale for rare diseases : a tool for measuring the supportive care needs of parents caring for a child with a rare disease. Journal of Multidisciplinary Healthcare, 2016(9), 425-433. https://doi.org/10.2147/JMDH.S113898

Background: Children and families affected by rare diseases have received scant consideration from the medical, scientific, and political communities, with parents’ needs especially having received little attention. Affected parents often have limite... Read More about Development of the parental needs scale for rare diseases : a tool for measuring the supportive care needs of parents caring for a child with a rare disease.

The supportive care needs of parents with a child with a rare disease : results of an online survey (2016)
Journal Article
Pelentsov, L., Fielder, A., Laws, T., & Esterman, A. (2016). The supportive care needs of parents with a child with a rare disease : results of an online survey. BMC Family Practice, 17(88), 1-13. https://doi.org/10.1186/s12875-016-0488-x

Background: Parents caring for a child affected by a rare disease have unmet needs, the origins of which are complex and varied. Our aim was to determine the supportive care needs of parents caring for a child with a rare disease. Methods: An... Read More about The supportive care needs of parents with a child with a rare disease : results of an online survey.

Informing the midwife on rare genetic disorders and their effects on mothers breastfeeding – a mixed methods study (2016)
Journal Article
Laws, T., Pelentsov, L., Steen, M., & Esterman, A. (2016). Informing the midwife on rare genetic disorders and their effects on mothers breastfeeding – a mixed methods study. Evidence Based Midwifery, 14(1), 11-15

Background: An inability to breastfeed is a common source of maternal distress. Genetic disorders can prevent lactation and impair mothers and infants ability to express breastmilk. Aim: The purpose of this paper is to report on the experiences of s... Read More about Informing the midwife on rare genetic disorders and their effects on mothers breastfeeding – a mixed methods study.

Risk factors for Barrett's esophagus : a scoping review (2016)
Journal Article
Ireland, C., Thompson, S., Laws, T., & Esterman, A. (2016). Risk factors for Barrett's esophagus : a scoping review. Cancer Causes and Control, 27(3), 301-323. https://doi.org/10.1007/s10552-015-0710-5

Introduction Cancer of the esophagus is a highly lethal disease with many patients presenting with metastatic spread of their tumor at diagnosis; a consequence of this late presentation is the 5-year survival rate of \20 %. Barrett’s esophagus (B... Read More about Risk factors for Barrett's esophagus : a scoping review.

Parenting a child with a rare genetic disorder (2016)
Book Chapter
Pelenstov, L., O'Shaughnessy, P., Laws, T., & Esterman, A. (2016). Parenting a child with a rare genetic disorder. In J. Merrick (Ed.), Children and Childhood : Some International Aspects (125-132). Nova Science Publishers

Parenting a child with a rare genetic disorder has special difficulties, because diagnosis may be delayed or undetermined, support groups may be small and geographically scattered, and healthcare skills and resources limited. Ectodermal dysplasia (ED... Read More about Parenting a child with a rare genetic disorder.