Parents Experiences of Going Home With Their Infant Following First Stage Cardiac Surgery For Single Ventricle Heart

Aims: The study presented here retrospectively explored how parents felt about going home with their infants following first stage cardiac surgery for single ventricle heart. Methods: Parents, all members of Little Hearts Matter (LHM, a UK Congenital Heart Disease Charity) completed an online questionnaire which asked about family demographics, time of diagnosis, location of specialist heart centre, distance from home, discharge information, social support, confidence, anxiety and how parents felt at the time of discharge (T0) and at the time of completing the questionnaire (T1). A non-experimental survey design was used; the questionnaire was structured so that both parents could answer the questions independently. 62 families with infants aged between 0-2 years were sent an email via LHM inviting them to complete the online questionnaire during Nov 2012. There were 22 responses (35% response rate) from 6 couples, 15 mothers and 1 father. Care had been received at 11 different specialist cardiac centres across the UK and 1 in Australia. Results: The answers from the open ended questions which explored how parents felt about going home and their experiences were thematically analysed using an inductive approach. Five main themes arose: Mixed emotions ‘fear versus excitement’; the need for effective discharge preparation for parents; the need for effective discharge planning and preparation for community staff and local hospital teams; the need for access to information and advice (once home) and gaining control: the need to return to family functioning. Conclusion: The study confirms anecdotal experiential evidence and has provided new insights into factors that may be associated with discharge from hospital to home for parents of infants with complex congenital heart disease. Implications for the review of children’s congenital cardiac services will be discussed specifically in relation to the discharge support role of ward nurses, children’s cardiac nurse specialists, psychologists and community teams

IAALD 2013 World Congress Paper Presentations, D-M

IAALD 2013 World Congress Paper Presentations, first presenter last names D-

Agricultural Information Worldwide, vol. 6, 2014

Agricultural Information Worldwide, Volume 6, 2014In this issue: FROM THE EDITOR’S DESK / Jim Morris-Knower (3); Conference Reflections / Antoinette Paris Greider (4). ARTICLES: Keynote Address: The State of Information Literacy Policy: A Global Priority / Sharon Weiner (5); Framing of Climate Change News in Four National Daily Newspapers in Southern Nigeria / Agwu Ekwe Agwu, Chiebonam Justina Amu (11); Access and Use of Information Communication Technologies by Women Staff of Public Extension Service in the North Central Zone of Nigeria / Agwu Ekwe Agwu, Elizabeth Ene Ogbonnah (18); Providing User Preferred Information Resources for a New Faculty of Agriculture, Nnamdi Azikiwe Univeristy, Awka, Nigeria / Chinwe V. Anunobi, Andrew U. Ogbonna (25); Diffusion of Scientific Knowledge in Agriculture: The Case for Africa / Shimelis Assefa, Daniel Gelaw Alemneh, Abebe Rorissa (34); The Use of Social Media in Agricultural Research Workflows in Ghana and Kenya / Justin Chisenga, Richard Kedemi, Joel Sam (48); Towards Mobile Agricultural Information Services in Zimbabwean Libraries: Challenges and Opportunities for Small Sacle Farmers in Utilizing ICTs for Sustainable Food Production / Collence Takaingenhamo Chisita, Thembani Malapela (58); Agriculture and Natural Resource Scientists' Biodiversity Information Needs: Barriers and Facilitators to Use and Access in the U.S. Southeast / Miriam L.E. Steiner Davis, Carol Tenopir, Suzie Allard (66); French Agricultural Research Institute Paves the Way to Open Access: Feedback from CIRAD / Marie-Claude Deboin, Cécile Fovet-Rabot (77); Exploring Relevance of Agro Input Dealers in Disseminating and Communicating of Soil Fertility Management Knowledge: The Case of Siaya and Trans Nzoia Counties, Kenya / T. B. Etyang, J. J. Okello, S. Zingore, P. F. Okoth, F. S. Mairura, A. Mureithi, B. S. Waswa (82); Plantwise Knowledge Bank: Building Sustainable Data and Information Processes to Support Plant Clinics in Kenya / Cambria Finegold, MaryLucy Oronje, Margo C. Leach, Teresia Karanja, Florence Chege, Shaun L.A. Hobbs (96); Innovation in Extension Services for Improved Farmer Access to Agricultural Information in Uganda / Patrick Kasangaki (102); Managing a Web Portal Adapting to New Technologies / Soonho Kim, Kathryn Pace Kincheloe, Yuan Gao, Valdete Berisha (107); Library Outreach to University Farm Staff / Emily MacKenzie, Natalie Waters (114); Enhancing Access to Research in Institutional Repositiories through API / Ryan Miller, Indira Yerramareddy (118); Building Capacity of Smallholder Farmers in Agribusiness and Entrepreneurship Skills in Northern Uganda / Basil Mugonola, Callistus Baliddawa (122); The Data Landscpe of the Coral Triangle / Jeanette Norris (127); Agricultural Information Access Among Smallholder Farmers: Comparative Assessment of Peri-Urban and Rural Settings in Kenya / Dorine Odongo (133); From Local to Global: Launching the New Rangelands West Portals and Database / Jeanne L. Pfander, Barbara S. Hutchinson, Valeria Pesce, Matt Rahr (138); Seed Village Programme: An Innovative Approach for Small Farmers / Dheeraj Singh, M. K. Chaudhary, M. L. Meena, M. M. Roy (143); Transformation of Indian Agricultural Libraries in a Digital and Collaborative Era: A Case Study / Neena Singh, Anil Chikate (147); Collaboration for Impact / Indira Yerramareddy, Luz Marina Alvaré, Katarlah Taylor (157