ADAMS project: a genetic Association study in individuals from Diverse Ancestral backgrounds with Multiple Sclerosis based in the UK.

Purpose: Genetic studies of multiple sclerosis (MS) susceptibility and severity have focused on populations of European ancestry. Studying MS genetics in other ancestral groups is necessary to determine the generalisability of these findings. The genetic Association study in individuals from Diverse Ancestral backgrounds with Multiple Sclerosis (ADAMS) project aims to gather genetic and phenotypic data on a large cohort of ancestrally-diverse individuals with MS living in the UK.

The neurogenic bladder: developing a consensus bladder and bowel management pathway for people with MS.

This article outlines how the bladder can be affected in neurological conditions such as multiple sclerosis (MS) and the impact this has on patient quality of life and NHS resources. A group of MS and bladder and bowel nurse specialists has developed consensus bladder pathways in the hope that all nurses in contact with patients who are likely to have neurogenic bladder symptoms become 'bladder aware'.

Validity and Acceptability of Wearable Devices for Monitoring Step-Count and Activity Minutes Among People With Multiple Sclerosis.

Multiple wearable devices that purport to measure physical activity are widely available to consumers. While they may support increases in physical activity among people with multiple sclerosis (MS) by providing feedback on their performance, there is little information about the validity and acceptability of these devices. Providing devices that are perceived as inaccurate and difficult to use may have negative consequences for people with MS, rather than supporting participation in physical activity.

Social interactions at school of children who are medically fragile and developmentally delayed.

The social interactions (n = 576) of 11 children who were medically fragile and developmentally delayed (MF/DD) were analyzed. Children interacted with a range of 5-23 people (M = 13.82) during the course of a school day, averaging 52 social encounters (range, 27-75).

The search for social safety and comfort in families raising children with complex chronic conditions.

Social consequences of raising children who were medically fragile and developmentally delayed (MF/DD) were explored in an ethnographic study of 20 families with school-age children. The overarching theme was the families' search for safety and comfort in social situations. Major categories comprising this theme included the need to anticipate and plan for the child's care; overcoming environmental, child-related, and attitudinal barriers; and finding social activities that were comfortable for all members of the family.

Normalization in families raising a child who is medically fragile/technology dependent and developmentally delayed.

The authors combined and analyzed parent data from two field studies examining family experiences in raising children who were both medically fragile and developmentally delayed or disabled to compare these families' experiences to published attributes of normalization. Normalization is usually considered a useful conceptual and coping strategy for families of children with chronic conditions, but it has not been examined in families whose children have both complex physical and developmental disabilities. Developmental delays compounded the effects of the children's physical chronic conditions, severely affecting how families organized and managed their daily lives, with the result that families did not fit currently established attributes of normalization.

Conducting school-based focus groups: lessons learned from the CATS project.

Participation of children in focus groups has received scant attention despite the effectiveness of group interviews in eliciting children's views. Focus groups are a valuable approach for generating qualitative data from children; however, conducting school-based focus groups involves challenges specific to the school milieu and the ages and development of the participants. Lessons learned from conducting school-based focus groups during the Child-Adolescent Teasing Scale (CATS) project are applied to examination of key issues including entry to schools, informed consent and confidentiality, students' cognitive development, safety within the group, and appropriate procedures.