Susie has a Psychology degree and MSc in Health Psychology. Susie has been working as a researcher on various projects in the field of children and young people’s cancer care for over 13 years now. Most recently, she has worked on projects involving: 1) the development of benchmarks to improve transition from child to adult health care 2) developing and testing ‘Sisom’, an application which aims to help children with cancer report their symptoms/problems and aid communication with health professionals and 3) a James Lind Alliance priority setting partnership setting future priorities for teenage and young adult cancer research. Susie’s research interests include: the experiences of children and young people who have cancer, communication about cancer, symptoms and treatment between children, professionals and parents, using technology to improve patient care, using innovative participatory techniques to engage with children in research and transition from child to adult health services.
Objectives To conduct a UK-wide survey of young people who have experienced cancer, carers and professionals, to identify and prioritise research questions to inform decisions of research funders and support the case for research with this unique cancer population.
Design James Lind Alliance Priority Setting Partnership.
Setting UK health service and community.
Methods A steering group oversaw the initiative and partner organisations were recruited. Unanswered questions were collected in an online survey. Evidence searching verified uncertainties. An interim survey was used to rank questions prior to a final prioritisation workshop.
Participants Young people aged 13?24 years with a current or previous cancer diagnosis, their families, friends, partners and professionals who work with this population.
Results Two hundred and ninety-two respondents submitted 855 potential questions. Following a refining process and removal of ?out of scope? questions, 208 unique questions remained. Systematic evidence checking identified seven answered questions and 16 were the subject of ongoing studies. The interim survey was completed by 174 participants. The top 30 questions were prioritised at a workshop attended by 25 young people, parents and multidisciplinary professionals. The top three priorities are: (1) What psychological support package improves psychological well-being, social functioning and mental health during and after treatment? (2) What interventions, including self-care, can reduce or reverse adverse short-term and long-term effects of cancer treatment? (3) What are the best strategies to improve access to clinical trials? The remaining questions reflect the complete cancer pathway: new therapies, life after cancer, support, education/employment, relapse and end-of-life care.
Conclusions We have identified shared research priorities for young people with cancer using a rigorous, person-centred approach involving stakeholders typically not involved in setting the research agenda. The breadth of priorities suggest future research should focus on holistic and psychosocial care delivery as well as traditional drug/biology research.
Background: Unintentional injuries are a leading cause of preventable death and a major cause of ill health and disability in children under five years of age. A health promotion mobile phone application, ?Grow up Safely?, was developed to support parents and carers in reducing unintentional injuries in this population of children.
Methods: A prototype of the mobile application was developed to deliver health education on unintentional injury prevention linked to stages of child development. In order to explore the usability of the app and refine its content, three focus groups were conducted with 15 mothers. Data were analysed using thematic analysis.
Results: The majority of participants reported previous use of health apps, mainly related to pregnancy, and recommended by health professionals. The app was considered user?friendly and easy to navigate. Participants in two focus groups found the app informative, offered new information and they would consider using it. Participants in the ?young mum's? group considered the advice to be ?common sense?, but found the language too complex. All participants commented that further development of push?out notifications and endorsement by a reputable source would increase their engagement with the app.
Conclusion: The ?Grow Up Safely? mobile phone app, aimed at reducing unintentional injuries in children under five, was supported by mothers as a health promotion app. They would consider downloading it, particularly if recommended by a health professional or endorsed by a reputable organisation. Further development is planned with push?out notifications and wider feasibility testing to engage targeted groups, such as young mothers, fathers and other carers.
Aldiss S, Martins A, Gibson F. (2017) Key worker role in end of life care: ‘I’d call it knitting…….making sure that the five or six elements that we needed, they were knitted together…….coordinated’. 49th Congress of the International Society of Paediatric Oncology, Washington DC, USA October 2017, Abstract 0-177, Pediatric Blood and Cancer 64(12) Supplement S3:97.
Aldiss S, Cass H, Ellis J, Gibson F. (2016) "We Sometimes Hold on to Ours" - Professionals' Views on Factors that both Delay and Facilitate Transition to Adult Care. Frontiers in Pediatrics 24, 4:125. eCollection.
Martins A, Aldiss S, Gibson F. (2016) Specialist nurse key worker in children's cancer care: Professionals' perspectives on the core characteristics of the role. European Journal of Oncology Nursing 24, 70-78.
Campbell F, Biggs K, Aldiss S, O'Neill PM, Clowes M, McDonagh J, While A, Gibson F. Interventions to improve transition of care for adolescents from paediatric services to adult services. Cochrane Database of Systematic Reviews. 2016. DOI: 10.1002/14651858.CD009794.pub2.
Walker E, Martins A, Aldiss S, Gibson F, Taylor RM (2016) Psychosocial Interventions for Adolescents and Young Adults Diagnosed with Cancer During Adolescence: A Critical Review. Journal of Adolescent and Young Adult Oncology. 5(4), 310-321
Aldiss S, Ellis J, Cass H, Pettigrew T, Rose L, Gibson F (2015) Transition From Child to Adult Care – ‘It's Not a One-Off Event’: Development of Benchmarks to Improve the Experience, Journal of Pediatric Nursing, 30(5), 638–647.
Aldiss S. Rose L, Cass H, Ellis J, Gibson F (2015) Moving from child to adult health care: development of benchmarks for transition. Royal College of Paediatrics and Child Health, Annual Conference 28-30TH April, 2015 Birmingham UK, Archives of Disease in Childhood, 100 (Suppl 3), G156, A67.
Martins A, Aldiss S, Gibson F (2015) Models of key working in children’s cancer care: professional and parents view. Royal College of Paediatrics and Child Health, Annual Conference 28-30TH April, 2015 Birmingham UK, Archives of Disease in Childhood, 100 (Suppl 3), G404, A166.
Martins A, Aldiss S, Taylor R, Gibson F (2015) Listening to parents: mix methods evaluation of the key worker role UCL Symposium Abstracts 17, BMJ Open, 5(4): PP006.
Aldiss S, Baggott C, Gibson F, Mobbs S, Taylor RM (2015) A Critical Review of the Use of Technology to Provide Psychosocial Support for Children and Young People with Long-Term Conditions. Journal of Pediatric Nursing 30, 87–101.
Gibson F, Shipway L, Aldiss S, Hawkins J, King W, Parr M, Ridout D, Verity R, Taylor R (2013) Exploring the work of nurses who administer chemotherapy to children and young people. European Journal of Oncology Nursing 17, 59-69.
Kumpunen S, Shipway L, Taylor R, Aldiss S, Gibson F. (2012) Practical approaches to seeking assent from children. Nurse Researcher 19, 2, 23-27.
Gibson F, Aldiss S, Bryan G, Forbat L, Horstman M, Kumpunen S, Say T, Goulden N (2011) Navigating specialist information during treatment: the roles of parents and professionals. Annual Conference of the International Society of Paediatric Oncology, Auckland, New Zealand, October 2011. Pediatric Blood and Cancer 57, 5, p715.
Aldiss S, Taylor RM, Soanes L, Maguire R, Sage M, Kearney N, Gibson F. (2011) Working in collaboration with young people and health professionals: a staged approach to the implementation of a randomised controlled trial. Journal of Research in Nursing. 16, 6, 561-576.
Kumpunen S, Aldiss S, Forbat L, Goulden N, Horstman M, Macintyre V, Ranasinghe N, Say T, Gibson F. (2011) An exploration of parents’ and professionals roles in sharing illness and treatment information with children who have cancer. Royal College of Paediatrics and Child Health Annual Conference, Warwick University. Archives of Disease in Childhood, 96, A83-A84.
Gibson F, Aldiss S, Kumpunen S, Horstman M, Richardson A. (2010) Children and young people’s experiences of cancer care: a qualitative research study using participatory methods. International Journal of Nursing Studies 47, 1397-1407.
Gibson F, Shipway L, Aldiss S, Verity R, Parr M, Ridout D, Taylor R Exploring the work of nurses who administer chemotherapy to children and young people. Abstract 0063 (oral presentation) International Society of Paediatric Oncology SIOP XXXXII Congress, Boston, United States, October 2010. Pediatric Blood and Cancer, 2010 55, 5, p801
Gibson F, Aldiss S, Taylor RM, Maguire R, McCann L, Miller M, Sage M, Kearney N. (2010) Utilisation of the MRC Evaluation Framework in the development of technology for symptom management: the ASyMS-YG Study. Cancer Nursing 33, 5, 343-352.
Gibson F, Aldiss S, Taylor RM, Maguire R, Kearney N (2009) Involving Health Professionals in the Development of an advanced symptom management system for young people: the ASyMS©-YG Study. European Journal of Oncology Nursing 13, 187-192.
Aldiss S, Horstman M., O’Leary C., Richardson A. and Gibson F. (2009) What is important to young children who have cancer while in hospital? Children and Society 23, 85-98.
Gibson F, Aldiss S, McCann L, Maguire R, Sage M, Kearney N (2008) Monitoring and managing chemotherapy related toxicity using mobile phone technology with young people: the ASyMS-YG study. Supportive Care in Cancer 16 684 (Abstract 12-111 poster) 2008 International MASCC/ISOO Symposium Houston, Texas.
Horstman M, Aldiss S, O’Leary C, Richardson A, Gibson F. (2008) Methodological issues when using the draw and write technique with children aged 6-12 years. Qualitative Health Research 18, 7, 1001-1011.
Gibson F, Aldiss S, McCann L, Maguire R, Miller M, Kearney N (2007) Using a mobile phone based advanced symptom management system to monitor and manage chemotherapy related toxicity. Pediatric Blood and Cancer 49 (4): 408 (Abstract 0.035). Presentation at 39th Annual Conference of the International Society of Paediatric Oncology (SIOP), Mumbai, India.
Hey S., Gibson F., Richardson A., Horstman M., O’Leary C. (2005) Understanding the care and support needs of children and young people with cancer- a participatory research study. European Journal of Cancer Supplements 3 (2): p.468 (Abstract 1620). Poster presented at the European Cancer Conference ECCO 13.
Hey S., Gibson F., Richardson A., Horstman M., O’Leary C. (2005) Children and young people’s experiences of and views about cancer care service. Pediatric Blood and Cancer 45 (4): p.397 Abstract 0.058) Presentation at 37th Annual Conference of The International Society of Paediatric Oncology SIOP Vancouver, Canada.
Gibson F., Richardson A., Hey S., Horstman M., O’Leary C. (2005) The care and support needs of children and young people with cancer. Pediatric Blood and Cancer 45 (4): p.399 (Abstract 0.064) Presentation at 37th Annual Conference of The International Society of Paediatric Oncology (SIOP) Vancouver, Canada.
Viner R, Christie D, Taylor V, Hey, S. (2003). Motivational/solution focused intervention improves HbA(1c) in adolescents with Type 1 diabetes: A pilot study. Diabetic Medicine 20, 9, 739-742.