“And then there was silence”:Shaping practice through the experience of parents’ emotions

Background: Spina Bifida, the most common Neural Tube Defect (NTD) occurring around 28 days following conception, is often discovered in a routine ultrasound examination. Aim: To articulate and analyse parents’ recollection of the emotions they experienced at the moment they were informed their unborn baby may have neurological disabilities. Method: Qualitative study, using participatory visual narrative method, to elicit data from parents caring for young children with Spina Bifida. Results: The emotions that were described, at the point of diagnosis, and the crafted stories parents shared, demonstrated the significance, and the long lasting impact of their experience. The voices we captured call for a change in practice, where healthcare professionals involved in caring for expecting parents transform the way sensitive information about prenatal abnormalities is shared. Conclusion: Role and care transitions of parents who choose to keep their babies, despite their impending disability, is a lengthy and complex process. Training is needed to ensure professionals offer appropriate support throughout this period, and input from not for profit organisations should be considered at an early stage.<br/

Transition into adult healthcare services in Scotland –findings from a study concerning service users at the Scottish Spina Bifida Association

Background and Aims: Literature on interventions that enable young people with spina bifida and/or hydrocephalus to have smooth transition, into adult healthcare services, stress the need for the process to start early and to include all family members. The study reported here was set to quantify and articulate the experiences of service users who are or due to be going through the transition process in Scotland today. Methods and Results: Focus group sessions, in the North of Scotland and in the ‘Central Belt’, captured rich qualitative data. A survey, sent to eligible participants on the Spina Bifida National database, offered complimentary data source. Despite the fact that the number of returned questionnaires was low (n = 20), data analysis identified a number of core recurring themes. These include issues concerning Communications, Respect, Choice and Control. Findings suggest that there is a significant chasm between the political rhetoric and the reality faced by young people with spina bifida moving to adult healthcare services. Conclusion: A possible way to facilitate successful transition of young people is using personal healthcare information as the locus for needed change. More research is needed to ascertain whether a ‘Person-Centred Record’, which is set to empower young people on their transition pathway, is an appropriate transition tool

Reach of Supplemental Nutrition Assistance Program-Education (SNAP-Ed) interventions and nutrition and physical activity-related outcomes, California, 2011-2012.

IntroductionThis study combined information on the interventions of the US Department of Agriculture's Supplemental Nutrition Assistance Program-Education with 5,927 interview responses from the California Health Interview Survey to investigate associations between levels of intervention reach in low-income census tracts in California and self-reported physical activity and consumption of fruits and vegetables, fast food, and sugar-sweetened beverages.MethodsWe determined 4 levels of intervention reach (low reach, moderate reach, high reach, and no intervention) across 1,273 program-eligible census tracts from data on actual and eligible number of intervention participants. The locations of California Health Interview Survey respondents were geocoded and linked with program data. Regression analyses included measures for sex, age, race/ethnicity, and education.ResultsAdults and children from high-reach census tracts reported eating more fruits and vegetables than adults and children from no-intervention census tracts. Adults from census tracts with low, moderate, or high levels of reach reported eating fast food less often than adults from no-intervention census tracts. Teenagers from low-reach census tracts reported more physical activity than teenagers in no-intervention census tracts.ConclusionThe greatest concentration of Supplemental Nutrition Assistance Program-Education interventions was associated with adults and children eating more fruits and vegetables and adults eating fast food less frequently. These findings demonstrate the potential impact of such interventions as implemented by numerous organizations with diverse populations; these interventions can play an important role in addressing the obesity epidemic in the United States. Limitations of this study include the absence of measures of exposure to the intervention at the individual level and low statistical power for the teenager sample

Collecting resilience points for a smooth transition to adult healthcare services:co-creating a playful resource for Spina Bifida.

Background: The transition of young people with a disability or a chronic health condition, from paediatric to adult focused health and social care services, in Scotland, is known to be difficult. There is a significant body of evidence to suggest that a transition should start early, be holistic and inclusive, as well as structured to build essential capabilities and promote resilience. The nurse led project, reported here, was set to create a playful mechanism for meaningful interactions between young people, families and healthcare professionals involved in the transfer of care. Methodology: Salutogenic theory and efforts to enhance a ‘sense of coherence’ guided developments of a collaborative boardgame entitled ‘The Young Heroes’. Through participatory design and the ecological framing of resilience, the captured lived experience of adults with spina bifida who already transitioned to adult care, was used to enhance developments. Playtests with a range of stakeholders was used to further hone and validate the tool. Results: Seeking to co-create a tool to support effective transitions, enabled a team to craft and test a transition game that is easily accessible, inclusive, and sufficiently adaptable to fit different settings, communities and cultures. The open licence grants others a free access to download, play and adapt this game so it could be further used, enhanced and validated. <br/