Communicating cystic fibrosis newborn screening results to parents.

The way results of cystic fibrosis (CF) newborn screening are communicated to parents is critical yet is done differently across the globe. We surveyed parents of 101 children in our tertiary London paediatric centre with a 48% response rate. Parental responses were as follows: 40/42 (95%) said the information could not have been given over the phone and 39/43 (91%) said they wanted both partners present; 27/42 (64%) said it was helpful having the health visitor also present; and 37/40 (92%) felt it was acceptable to wait until the next day for the sweat test. We have reduced the time from first contact to arriving in the home to 2-3 h.Conclusion: We believe that this survey backs up our approach of a home visit by a CF nurse specialist with the family's health visitor to break the news. This is challenging in the current COVID-19 pandemic. What is Known: • Breaking bad news can have a lasting impact on parents when not done the right way. • Giving results of cystic fibrosis (CF) newborn screening is done differently within the UK and around the world. What is New: • Our parental survey revealed that the majority (92%) believed this should be done face to face and not over the telephone. • There was a mixed response to whether the parents should be told the genotype (assuming the CF centre knew), and thus the CF diagnosis before the confirmatory sweat test was carried out.

Liquid crystal alignment induced by micron-scale patterned surfaces.

Induced bulk orientation of nematic liquid crystal in contact with micron-scale patterned surfaces is investigated using the Landau-de Gennes theory by means of three-dimensional simulations. The effect of the size and spacing of square cross-sectional well and post patterns is investigated and shown to influence the orientation of the liquid crystal bulk, far removed from the surface. Additionally, the effective anchoring strength of the induced alignment is estimated using a modified version of the torque balance method. Both azimuthal and zenithal multistability are shown to exist within unique ranges of feature sizes.

Referrals to a voluntary sector cancer day care centre: a descriptive study.

In the UK, recent guidance on supportive and palliative care has acknowledged the contribution of voluntary organizations, including their role in palliative day care. Similarly, research has tended to focus exclusively on palliative day care as opposed to comparable care for people with cancer, regardless of prognosis. This paper describes a case record review study conducted at a nurse-led voluntary sector cancer day care centre. The study focused on referrals over a one-year period in terms of user demographics, referral sources/reasons and subsequent care given. It was found that 220 referrals (including 106 self-referrals) were made during the year. Of these, 70.9% were people with cancer and the remainder were carers/bereaved people. Those referred broadly reflected national statistics on age, gender and cancer diagnosis. Carers were rarely referred by professionals, few lived in inner-city neighbourhoods and some had no informal support. Non-specific referral reasons, such as 'support', tended to be translated into specific therapies, such as complementary therapies and counselling, at initial assessment. Care offered at the centre appeared to supplement and complement that provided by local statutory services. The study raised issues for practice and further research that may be relevant to those working in similar centres.