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.

Risk factors for Barrett's esophagus: a scoping review.

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 (BE), a premalignant condition of the distal esophagus, is the main risk factor for adenocarcinoma of the esophagus. The development of a risk prediction tool that could assist healthcare professionals in identifying people at increased risk of developing BE would be advantageous.

The supportive care needs of parents caring for a child with a rare disease: A scoping review.

Background: Parents caring for a child with a rare disease report unmet needs, the origins of which are varied and complex. Few studies have systematically attempted to identify the supportive care needs of parents with a child with a rare disease comprehensively. We have used the widely accepted Supportive Care Needs Framework (SCNF) as the structure for this review.

Nursing student's evaluation of a virtual classroom experience in support of their learning Bioscience.

Face-to-face communication with students remains the gold standard in teaching; the effectiveness of this approach to learning is commonly and regularly assessed by students' evaluation of teaching and peer reviews of teaching. Critics note that increases in on-line education are driven more by economic forces than consistent evidence to show their long-term effectiveness or acceptance by students. Numerous studies report that students in higher education found their external studies comparatively more challenging than face-to-face delivery.

Differences in self-reported outcomes of open prostatectomy patients and robotic prostatectomy patients in an international web-based survey.

Objectives: To compare patient reported outcomes between robotic assisted surgery and non-robotic assisted surgery.

Methods: This was an international web-based survey based on a qualitative research and literature review, an internet-based questionnaire was developed with approximately 70 items. The questionnaire included both closed and open-ended questions.

The prostate cancer journey: results of an online survey of men and their partners.

Background: The initial impact of treatments for men with prostate cancer is well reported in the literature. Less is known about the psychosocial needs of these men as their journey after diagnosis and treatment continues into the months and years.

Objective: The objective of this study was to examine and understand the supportive care needs of men diagnosed and treated for prostate cancer at key identifiable periods of their cancer journey.

Universities' expectations of pastoral care: trends, stressors, resource gaps and support needs for teaching staff.

Overview: Since the mid-90s, the university environment has challenged the motivation of academic staff to engage in pastoral care. A literature review revealed five themes that aligned with analysis of interview data from a previous study (Laws and Fiedler, 2010). The key themes were i) staff were often disturbed by unplanned intrusions of students who exhibited behavioural problems or sought emotional support, ii) the management of emotions in face-to-face encounters was stressful, iii) staff felt under-equipped for dealing with Mental Health (MH) issues, iv) standards and control needed updating and v) counselling and disability services did not meet academics' need to know about 'at risk' students.