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.

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 limited access to information and support and appropriate health care services. While scales to measure the needs of parents of children with chronic illnesses have been developed, there have been no previous attempts to develop a scale to assess the needs of parents of children with rare diseases.

The supportive care needs of parents with a child with a rare disease: results of an online survey.

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 online survey was developed consisting of 45 questions (108 items) and separated into six domains.

The Supportive Care Needs of Parents With a Child With a Rare Disease: A Qualitative Descriptive Study.

There are few studies that exist which focus specifically on parents with a child with a rare disease. The purpose of this study was to better understand the lived experiences and supportive care needs (SCN) of parents caring for a child across a spectrum of rare diseases. A qualitative descriptive approach was used to guide the research, and four semi-structured focus group interviews were conducted with 23 parents (17 mothers and 6 fathers).

Factors associated with domperidone use as a galactogogue at an Australian tertiary teaching hospital.

Background: Insufficient milk supply is 1 of the most commonly reported reasons for discontinuation of infant breastfeeding. Although domperidone is often used to improve milk supply, knowledge of factors associated with the use of domperidone in clinical practice is scarce.

Objective: This study aimed to examine factors associated with the use of domperidone as a galactogogue at the Women's and Children's Hospital (WCH), Adelaide.