Susie Aldiss

Susie Aldiss


Research Fellow (Child Health)
Psychology BSc, Health Psychology MSc
+44 (0)1483 684132
GSA
Monday, Thursday, Friday.

Biography

My publications

Publications

Campbell F, Biggs K, Aldiss S, O?Neill P, Clowes M, McDonagh J, While A, Gibson F (2016) Transition of care for adolescents from paediatric services to adult health services, Cochrane Database of Systematic Reviews (4) CD009794 John Wiley & Sons Ltd.
Background There is evidence that the process of transition from paediatric (child) to adult health services is often associated with deterioration in the health of adolescents with chronic conditions.Transitional care is the term used to describe services that seek to bridge this care gap. It has been defined as ?the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centred to adult-oriented health care systems?. In order to develop appropriate services for adolescents, evidence of what works and what factors act as barriers and facilitators of effective interventions is needed. Objectives To evaluate the effectiveness of interventions designed to improve the transition of care for adolescents from paediatric to adult health services. Search methods We searched The Cochrane Central Register of Controlled Trials 2015, Issue 1, (including the Cochrane Effective Practice and Organisation of Care Group Specialised Register), MEDLINE, EMBASE, PsycINFO, and Web of Knowledge to 19 June 2015. We also searched reference lists of included studies and relevant reviews, and contacted experts and study authors for additional studies. Selection criteria We considered randomised controlled trials (RCTs), controlled before- and after-studies (CBAs), and interrupted time-series studies (ITSs) that evaluated the effectiveness of any intervention (care model or clinical pathway), that aimed to improve the transition of care for adolescents from paediatric to adult health services. We considered adolescents with any chronic condition that required ongoing clinical care, who were leaving paediatric services and going on to receive services in adult healthcare units, and their families. Participating providers included all health professionals responsible for the care of young people.
Aldiss SK, 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 4 125 pp. 1-12 Frontiers Media
Background: The transition from child to adult services is a crucial time in the health of young people who may potentially fall into a poorly managed 'care gap'. Health service provision, which fails to meet the needs of young people and families at this time of significant change, may result in deterioration in health or disengagement with services, which can have negative long-term consequences. Developing transitional care packages has become a focus of activity in the United Kingdom and elsewhere. Indeed policy documents have been trying to guide practice for many years, with some variable success. There is much work still to be done, particularly around how guidance and the sharing of best practice, when combined can result in a change practice. Objective: This study aimed to explore the views of professionals involved in transitional care, the process of transition in their services, the barriers and facilitators to transition. Methods: This was a qualitative study using focus group methodology. Four focus groups were carried out, attended by 36 health professionals across child and adult services. They had expertise in working with young people with various health conditions and disabilities. Transcripts were analysed using qualitative content analysis. Results: Eight key factors that impact on transition emerged from the data. These included factors associated with the patient group (such as age, health condition, having complex needs) as well as factors associated with services (such as the availability of equivalent services within adult care and the links between child and adult team). Conclusion: It is imperative that health professionals consider the population they are working with when planning transitional care and take into account the factors which can lead to delayed transition so that this can be avoided if possible. Numerous examples of initiatives to facilitate more timely transition were shared: these have been reflected in our ?Benchmarks for Transition from Child to Adult Health Services?. We offer these benchmarks to inform and guide the practice of others, and illustrate their potential for use in the context of the findings shared here.
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., J Pediatr Nurs 30 (5) pp. 638-647
The transition from child to adult services is a crucial time in the health of young people who may potentially fall into a poorly managed 'care gap'. A multi-site, multi-staged study was undertaken to identify the key aspects of a transitional programme of care for young people. Through a process of mapping, which involved drawing on primary and secondary data, a clinical practice-benchmark tool was developed. Benchmarks are a health care quality performance measurement 'tool'. They provide clinical teams with standards that services can measure themselves against to see how they are doing. They are used in a comparing and sharing activity, using a structured and systematic approach, to share best practice. They offer a mechanism to look at processes, and provide an opportunity to analyse skills and attitudes, which may be the hidden narrative in benchmarking. This paper describes steps in the development of benchmarks for transition to adult care, often associated with low patient and family satisfaction. Qualitative data were collected through focus groups, workshops and interviews from 13 young people with long-term health conditions, 11 parents, 36 professionals and 21 experts leading on transition within the United Kingdom. Transcripts were analysed using qualitative content analysis. For young people and their parents/carers to experience timely and effective transition, eight factors and their associated indicators of best practice were developed from the primary and secondary data and refined through an iterative process. We recommend their use to clinical teams to inform system level strategies as well as evaluation programmes.
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
Adolescents and young adults (AYA) face individual and social challenges different to other age groups that shape their experience of cancer and the associated psychological distress. This critical review examined the availability of AYA-specific psychosocial interventions in order to assess the impact they have and identify elements that make them successful. Five literature databases were searched for psychosocial intervention studies involving AYAs with cancer, on and off-treatment, aged 10-30 years, published between 1980 and 2016. Eleven out of 42 identified studies were included in the final review after quality assessment. All but two interventions showed positive results on at least one measure of psychosocial wellbeing. A distinctive difference between the supportive needs of those on and off-treatment was noted, and differences in intervention design and delivery formats were identified between the two sub-groups. Analysis of specific intervention characteristics that achieved the successful outcomes was more challenging due to the large variation in outcome measures used. This review demonstrates that psychosocial intervention research for AYA with cancer is increasing and the results show a potential benefit of intervention participation. Further work is needed to validate whether the benefits achieved by intervention participation remain over time.
Martins A, Aldiss SK, 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 (EJON) 24 pp. 70-78 Elsevier
Purpose: To describe the development and implementation of the specialist nurse key worker  role across 18 children?s cancer centres in the United Kingdom, and draw out significant factors  for success to inform future development of the role across a range of specialities.  Method: Data were obtained through 42 semi?structured interviews and a focus group with 12  key workers. Framework analysis revealed two main themes: models of care and key workers?  perspectives of the role.  Results: Four models of care were identified and described, roles were organised along a  continuum of in reach and outreach with either the presence or absence of home visits and  direct delivery of clinical care. Key workers? perspectives of the advantages of the role included:  coordination of care (being the main point of contact for families/professionals), experience  and expertise (communication/information) and the relationship with families. The main  challenges identified were: time, caseload size, geographical area covered, staffing numbers  and resources available in the hospital and community.  Conclusion: The label ?key worker? was disliked by many participants, as the loss of ?specialist  nurse? in the title failed to reflect professional group. Leaving aside terminology, key workers  shared core role elements within a continuum of in reach and outreach work and their  involvement in direct clinical care varied throughout the pathway. Irrespective of the model  they worked in, the key worker provided clinical, emotional, educational, and practical support  to families, through the coordination of care, experience and expertise and relationship with  families and professionals.
Aldiss Susie, Gibson Faith (2018) Gathering expert opinion to inform benchmarks to support transitional care, Journal of Child Health Care SAGE Publications
This study aimed to: 1) explore views of known experts leading on transition, 2) gather insights on the essential features of transitional care models, 3) highlight opportunities for and barriers to change: to inform core elements of benchmarks for transitional care. We held three workshops (n=20), and used a telephone interview (n=1) with health and social care professionals with expertise working with young people with a range of health conditions and disabilities. The workshops included individual brainstorming, and group discussion. Data were analysed using qualitative content analysis. The general consensus from stakeholders? discussions about transition was that, ?things have become stuck?. Themes included: professionals? attitudes towards and knowledge about young people and transition, organisational barriers and ?lack of joined up thinking? between services. Our work offers further insight into experts? perceptions of transition services within the United Kingdom. It is clear there is still much to be done to improve transition, to better meet the needs of young people and parents and begin to offer equitable access to transitional care programmes. The benchmarks offer a starting point for professionals seeking to improve transition through enabling the identification of gaps in services and providing a platform to share successful practice initiatives.
Aldiss Susie, Fern Lorna A, Phillips Robert S, Callaghan Amy, Dyker Karen, Gravestock Helen, Groszmann Michael, Hamrang Leila, Hough Rachael, McGeachy Demi, Morgan Sue, Smith Sam, Upadhyaya Sheela, Veitch Helen, Veitch Lara, Williamson Max, Whelan Jeremy S, Gibson Faith (2019) Research priorities for young people with cancer: a UK priority setting partnership with the James Lind Alliance, BMJ Open 9 (8) e028119 pp. 1-10 BMJ Publishing Group

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.

Jones Felicity, Whitehouse Ali, Dopson Amy, Palaghias Niklas, Aldiss Susie, Gibson Faith, Shawe Jill (2019) Reducing Unintentional Injuries in under Fives: Development and Testing of a Mobile Phone App, Child: Care, Health and Development Wiley

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.

Additional publications