This study forms the evaluation aspect to a large transition-related innovation that is
taking place across England
(https://www.leedsth.nhs.uk/burdett-national-transition-nursing-network/).
It is important to formally evaluate this process. The study has been designed to determine
whether the Burdett National Transition Network and implementation of the Model of
Improvement for Transition has an impact on the experience of transitioning from child to
adult services for young people, and their families. The research team at the University of
Surrey will conduct a three-phased, mixed methods study to understand the experiences of all
relevant stakeholders involved in the Network and the model's implementation and transition
service users. The overall aim is to document new learning to ensure maximum reach of the
model within a network of transition care, and improve the outcomes for young people
transitioning to adult services.
STUDY DESIGN Our intention is to undertake a process evaluation using a case study approach.
The investigators want to look at the change from before, during and after the Model of
Improvement for Transition's implementation. The investigators plan to gather data at the
start of the project about what happens now, and then what happens as the Model of
Improvement for Transition evolves. The investigators will also gather information that is
already routinely collected on an ongoing basis in each of the sites working with the RNAs,
as part of the overall implementation project. This will be provided in summary form. As this
is an evolving process, this may include but may not be limited to the:
Number of Transition Lead roles for a whole organisation;
Number of organisations working through Transition QI process;
Number of organisations with transition contact;
Number of organisations with an Executive Lead for transition;
Number of Quality Improvement (QI) transition pathways completed;
Number of health-based youth workers that are in post to support transition;
Number of organisations with processes in place to use feedback from young people to
support service improvement;
Number of organisations with effective Transition governance processes in place e.g.
transition board, steering group, organisational policy and reporting.
Two organisations or services per region (eight study sites in total) that is involved in the
transition of young people to adult health services will be selected as case studies, giving
eight case studies in total. To inform an unbiased selection of cases, a list of criteria
will be described a priori by the project team, a consensus will be reached on the type, and
context of the services to be included based on maximum variation, for example, geography and
deprivation score, size of institution or service, ethnic diversity of the population, type
of long-term health condition. The investigators aim to include populations that are
under-researched such as: young people with complex needs, mental health problems, looked
after children, young people receiving palliative care, and those for whom English is not
their first language.
THEORETICAL FRAMEWORK
The 'On Your Own Feet Ahead' framework provides a focus for our study. The framework
addresses eight key elements of good transitional care, divided into three core categories:
interventions to improve the organisation of care;
interventions to stimulate independence and self-management of young people, and
collaboration with young people (and their families) and within the multidisciplinary
team of professionals, working both in child and adult health care.
METHODS
It is well recognised that the most challenging aspect of changing practice is implementation
and 'normalisation' of the 'intervention': therefore both qualitative (interviews) and
quantitative descriptive (surveys) will have an important role to play in gathering
contextual information from staff regarding how the Model of Improvement for Transition is
both received and delivered. In order to understand the context and how the Model of
Improvement for Transition is received and delivered our evaluation over three phases with
repeated measures will include:
The National Lead Nurse (Interviews)
Regional Nurse Advisors (Interviews)
Transition champions the Regional Nurse Advisors work with in the Trusts and key
professionals in the various networks (case studies; survey/interviews)
Young people and their parents/carers (case studies: survey/letter to a friend)
DATA ANALYSIS Survey data will be exported from Qualtrics to SPSS for analysis. Data stored
within Qualtrics will be deleted upon study completion. Participants will be given a unique
study ID. Only the study team will know the identity of the participants, necessary for the
integration and synthesis of the survey and letter to a friend data or interview data. Survey
data quality will be assessed for item/scale missingness at each time point and handled in
accordance with scale guidelines (where available). Survey data will be analysed using
descriptive statistics (e.g., means (standard deviations), medians (interquartile range) for
continuous data, frequencies for categorical data) and presented by key group characteristics
where appropriate (e.g., age group, gender etc) If appropriate, changes in the measurements
over time will be tested with two-tailed, paired sample T-tests and Wilcoxon Matched Pair
Signed Rank tests (Transition champion/key professionals), and repeated measures ANOVA (young
people and parents) . Statistical significance will be considered at p ≤0.05 and as an
exploratory study no adjustments will be made for multiple comparisons.
Interviews with the RNAs and Lead Nurse will be transcribed for analysis by a transcription
company approved by the University of Surrey. The confidentiality agreement is provided with
this application and can be found in clause 15 of the Transcription purchase order terms and
conditions document. Any identifying information (e.g. names of people/hospitals) will be
removed from the transcripts by the Researcher following transcription. The interviews will
be analysed using thematic analysis.
The narratives in videos from the letter/email/video to a friend activity will be analysed
using qualitative content analysis. The videos will not be transcribed. The research team
will develop a proforma for the parents' videos and a separate one for young people's videos.
Proformas will be developed by the researchers watching two videos each and coming together
to discuss the elements of the video. These proformas will be used for analysis of subsequent
videos.
Study data will be stored within SharePoint on the University of Surrey's password protected
server. Any files containing participant details will be password protected. Data will only
be accessible to the research team at the University of Surrey.
